Artificial Nutrition And Hydration At The End Of Life

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Journal of Nutrition For the Elderly
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Artificial Nutrition and Hydration at the End of Life
Roschelle A. Heuberger
To cite this article: Roschelle A. Heuberger (2010) Artificial Nutrition and Hydration at the End of
Life, Journal of Nutrition For the Elderly, 29:4, 347-385, DOI: 10.1080/01639366.2010.521020
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Review
Artificial Nutrition and Hydration
at the End of Life
ROSCHELLE A. HEUBERGER, PhD, RD
Department of Human Environmental Studies, Central Michigan University,
Mt. Pleasant, Michigan, USA
Considerable controversy surrounds the issue of care at the end of
life (EOL) for older adults. Technological advances and the legal,
ethical, clinical, religious, cultural, personal, and fiscal considera-
tions in the provision of artificial hydration and nutrition support
to older adults near death are presented in this comprehensive
review.
KEYWORDS artificial hydration, end of life, nutrition support,
older adult
INTRODUCTION
The burgeoning older adult population will result in a dramatic increase in
the oldest old in the United States within the next few decades. Many in this
segment will be racial, ethnic, and religious minorities, whose end of life
(EOL) wishes have not been legally documented and whose personal, cul-
tural, and religious observances regarding terminal illness, EOL care, and
dying may not be well understood by the health care community (1). Many
will be underinsured or uninsured, will be admitted to the health care system
through emergencies, and will not be able or competent to voice their desires
regarding how they wish to be cared for. The costs associated with this lack
Note from the Editor: Please see the opinion piece that directly follows this review. It is
based on a series of questions posed to three experts: Anthony N. Galanos, MA, MD, a nation-
ally recognized physician expert in the palliative care field; Emma C. Neff, JD, an attorney
with palliative care training; and Roschelle A. Heuberger, PhD, RD, author of this review.
Address correspondence to Roschelle A. Heuberger, PhD, RD, Department of Human
Environmental Studies, Central Michigan University, 106A Wightman Hall, Mt. Pleasant,
MI 48859, USA. E-mail: heube1ra@cmich.edu
Journal of Nutrition for the Elderly, 29:347–385, 2010
Copyright # Taylor & Francis Group, LLC
ISSN: 0163-9366 print=1540-8566 online
DOI: 10.1080/01639366.2010.521020
347

of clarity regarding EOL treatment are astronomical from a personal,
religious, social, ethical, and clinical perspective (2).
Numerous concerns have arisen regarding care of the older adult at the
end of life. Due to advances in technology and the ability to provide artificial
nutrition and hydration (ANH), research into the legal, ethical, clinical,
religious, cultural, personal, and fiscal aspects have been conducted (3).
Often, family or friends (surrogates) become decision makers and the burden
falls to them, not to the dying older adult (4). This is difficult when the older
adult is not competent to voice their wishes and no legal documentation exists
delineating their preferences (5).
The complexity and emotion attached to EOL care makes the process
difficult for the individual as well as family, friends, health care providers,
and society. Costs associated with continued provision of ANH and life sup-
port and taxpayer burden with increased Medicare and Medicaid utilization
results in further controversy. Medical paradigms dictate saving lives at all
costs, technological advances make extension of life possible, and societal
influences result in discomfort in allowing death to occur without medical
and technological intervention (6).
End of life approaches are associated with concepts such as hospice care,
palliative care, intensive medical care, and combinations thereof. An indivi-
dual’s wishes regarding their EOL care should be delineated in a
legal document where artificial feeding, hydration, mechanical ventilation, or
other support is described (7). This documentation includes items of advance
medical directive such as a conventional ‘‘Last Will and Testament,’’ Durable
Power of Attorney for Health Care (Allowable Health Care Proxy), Living Will,
‘‘Do Not Resuscitate’’ order, or other documentation (8). Legal issues regarding
what constitutes ‘‘end of life’’ or ‘‘death’’ in a highly technological environment,
where the body can be maintained using life support, must also be considered
(9). Table 1 provides definitions of terms and concepts, along with a brief over-
view of the context and philosophy associated with them.
Terminology and definitions differ slightly across Westernized nations,
but several European nations have paved the way for discussions regarding
EOL care in the United States and have enacted laws that set precedents for
U.S. courts and medical bodies (10). Religious authorities have also described
the beliefs and procedures appropriate for EOL care in various position
papers. Associations such as the American Dietetic Association, Association
of Speech Pathologists, and the Association of Hospice and Palliative Care,
among others, have issued statements that describe considerations and pro-
cedures for EOL care in the competent and incompetent older adult (11–13).
Consensus of findings indicates that legally documented personal choice
should determine what can and cannot be done in terms of ANH in an older
person near death (14). Unfortunately, this may not transpire in an emerg-
ency that is fraught with emotion, confusion, and occurs in a litigious
environment (15).
348 R. A. Heuberger

TABLE 1 Description of Care Concepts and Legal Terms Related to End of Life Servicesyz
Service concepty
Description
Hospice care Hospice care is a multidisciplinary approach to EOL care
when there is a definitive terminal course of illness, usually
defined as a six-month period before death. A network of
professionals and volunteers, often in the home, provides
support services that address all the needs of the dying
person and their family. The goal is exceptional quality of
life in the remaining time surrounded by family and friends
in a familiar environment. Palliative services such as
aggressive pain control are employed, but treatment of the
underlying pathology is not attempted. Curative measures
are not undertaken but supportive measures are. These
include, but are not limited to, psychotherapy, social
services, religious support, familial support and counseling,
grief=anger management, physical=occupational therapy,
dietetics, and provision of medical equipment and ancillary
services.
Palliative care Palliative care may be provided at any time during a person’s
illness. The focus is on symptom management during
assessment and treatment of the underlying
pathophysiology. It is not the same as hospice care,
although both seek to decrease pain and suffering, often by
using aggressive pain treatments and a holistic approach.
The intent is to provide the best possible quality of life. It is
a branch of internal medicine that is administered either in
the health care setting or in the home. It is usually done
using a team approach, involving palliative care physicians;
nurses; dietitians; social workers; clergy; and physical,
occupational, and psycho-therapists. Many larger
institutions have palliative care teams or units affiliated with
their intensive medical care division.
Intensive medical care Critical care medical units perform intensive medical care. It is
a subspecialty that is the most costly, most resource
intensive branch of medicine. Life supportive measures,
constant monitoring, technologically advanced treatments,
and equipment are used to prolong life in a patient with
potentially reversible critical illness, organ-system failure,
traumatic injury, or in unstable surgical patients. ANH is
usually part of this care.
Home health Home health care is provision of medical services to an ill
person in his or her home by a licensed home health
agency using skilled medical professionals and is billed to
the individual’s insurance. It is overseen by the patient’s
primary medical provider and includes services deemed
appropriate by a medical care plan. Services may include
but are not limited to the provision of medical equipment,
home aides for activities of daily living, nursing, dietetics,
speech, occupational and physical therapy, as well as social
work and, in some instances, hospice. Curative treatments,
life-prolonging measures and other interventions are used
in the person’s place of residence. It is usually time limited,
and insurance coverage or the person’s financial resources
determine time for provision of service.
(Continued )
Artificial Nutrition and Hydration at the End of Life 349

TABLE 1 Continued
Service concepty
Description
Advance medical directivey
Living will A legal document that can be drawn up and signed, stating
what medical and other life-sustaining procedures may or
may not be done in the event that a person becomes
mentally incompetent, comatose, otherwise incapacitated,
or terminally ill. Such documentation should be readily
available in the event of an emergent situation and on file
with the primary care provider and immediate family
members. Included in this documentation should be
decisions regarding artificial nutrition and hydration as well
as other treatment modalities.
Power of attorney A Durable Power of Attorney for Health Care Decisions is
documentation that identifies the person who can make
and carry out an individual’s wishes in the event that there
is an emergent situation, the individual is incapacitated
mentally or physically, or comatose. This responsibility is
also known as Health Care Proxy. General Durable Power
of Attorney is a legal document that designates another
person to act on the individual’s behalf concerning
legal or business matters. They can write checks,
access bank accounts, etc. while the individual is
incapacitated.
Health care proxy The right of a legally named person to execute the wishes for
treatment or refusal of treatment when an individual is
incapacitated.
Last Will and Testament Also known as a ‘‘Will,’’ this document is a legal set of
directions for what should be done after a person dies.
There is an executor for the will, a person determined a
priori who is responsible for dealing with the dead person’s
estate, assets, or other interests. This is not a replacement
for a ‘‘Living Will,’’ which can be executed while the person
is still alive, but incompetent.
Other considerationsz
Resuscitation To restore to life or consciousness, involving (usually)
cardiopulmonary efforts, such as mouth-to-mouth or
cardiac massage. Do Not Resuscitate or DNR orders are
medically and legally binding.
Pain management Management of pain and suffering requires an
interdisciplinary approach that uses several branches of
medicine and allied health. This may include
pharmacotherapy, biofeedback, physical and occupational
therapies, and psychotherapeutic approaches. Pain
medicine employs several different kinds of analgesic
medications, including opioids. Opioid medication in EOL
is common in palliative care, but is controversial due to
effects on multiple organ systems and fears regarding their
addictive potential. Decrements in respiratory competence
and swallowing reflexes as well as decreases in
gastrointestinal motility and hydration status is common,
even with low dose opioid administration.
(Continued )
350 R. A. Heuberger

Legal Issues Regarding ANH in End of Life Care
Several important decisions have been made in the past half-century regarding
the legalities of provision, withholding, and withdrawing artificial nutrition
and hydration. In a position paper from the American Dietetic Association,
TABLE 1 Continued
Service concepty
Description
Persistent vegetative state A state of extreme unresponsiveness, lasting for more than
one month, with no awareness or higher cerebral function.
Midbrain and brainstem functions are preserved, with
sleep-wake cycling and autonomic control over functions
such as breathing and heart rate. There may be some
reflexive movement. End-stage dementia often leads to
permanent vegetative state.
Permanent vegetative state After approximately one year of persistent vegetative state,
the diagnosis becomes ‘‘permanent vegetative state.’’
Coma State of extreme unresponsiveness, with no voluntary
movement or behavior; sometimes normal reflexes may be
lost. If the state persists for more than a month it becomes a
persistent vegetative state. There is maintenance of
autonomic functions. There are ‘‘grades’’ assigned to comas,
delineating severity and type.
Brain death Initial requirements for determination include: Neuroimaging
or clinical findings that suggest catastrophic cerebral events
where there are no identifiable other conditions that may
represent brain death, such as severe metabolic
derangement, intoxication, poisoning, or other acute
vascular anomaly. There is persistent unresponsiveness,
there are no reflexive responses to pain or any brainstem
responses, and there is apnea, with cessation of respiration
and circulation.
Uniform Determination of
Death Act (UDDA)
x
Adopted by almost all of the states in the United States, the
UDDA 7180, 7181, and 7182 states: 7180, 7181 ‘‘An
individual who has sustained either (1) irreversible
cessation of circulation and respiratory functions, or (2)
irreversible cessation of all functions of the entire brain,
including the brain stem, is dead. A determination of death
must be made in accordance with accepted medical
standards.’’ 7182 ‘‘When an individual is pronounced dead
by determining that the individual has sustained an
irreversible cessation of all functions of the entire brain,
including the brain stem, there shall be independent
confirmation by another physician.’’
x
Uniform Law Commissioners. Uniform Death Determination Act. Adapted from http://www.nccusl.org/
nccusl/uniformact_factsheets/uniformacts-fs-udda.asp, accessed June 1, 2010.
y
President and Fellows of Harvard College. A Guide to Living Wills and Health Care Proxies (Harvard
Special Health Report). Harvard Annual Report. 2008; 1:27.
z
Faymonville ME, Pantke KH, Berre J, et al. Cerebral functions in brain damaged patients: what is meant by
coma, vegetative state, minimally conscious state, locked in syndrome and brain death? Der Anaesthetist.
2004;53:1195–2003.

the Cruzan and Shiavo cases are outlined and the ensuing decisions explained
in terms of ANH withdrawal under specific circumstances. Table 2 describes
several important rulings governing ANH as a result of those cases.
The Patient Self Determination Act of 1991, requiring that all publicly
subsidized health care entities must inform patients of their right to choose
whether they wish to be treated via the legal documents of advance directive,
does not guarantee that patients will have advance directives, nor does it
guarantee that even if they do, their requests will be honored (16, 17). In
the event that decisions regarding ANH for an incompetent individual must
be made, the complexities of the process and the legal weight of surrogate
decision-making varies from state to state and country to country (18). If a
competent person chooses to forgo treatment when he or she is dying, even
if it is not in his best interest, it is legally binding in all Westernized countries
to accept patient wishes (19).
The right to choose not to undergo treatment comes under the doctrines
of informed consent and informed choice. Health care providers have the right
to investigate the underpinnings of choosing to forgo treatment, for example,
incompetence or mental illness. Self-determination allows the individual the
right to withdraw, withhold, or otherwise designate a surrogate to do this
for him or her in accordance to the 14th amendment to the U.S. Constitution
(20). This is fraught with legal implications. ‘‘Physician-assisted suicide,’’
‘‘passive euthanasia,’’ ‘‘double effect euthanasia,’’ and ‘‘aid in dying’’ are terms
that are associated with actions that may hasten death in an older adult who is
at the end of life. Physician-assisted suicide is killing oneself by use of a medi-
cal means, which is provided but not administered by a health care provider,
either taking prescribed lethal medications or removing of life-sustaining treat-
ments, such as ANH, by patient request (21). Many legal experts choose to dif-
ferentiate between active and passive assistance with death. Withholding and
withdrawing ANH is usually seen as passive assistance, legally, but may not be
seen as such ethically (22). Legally, physicians may be able to withdraw ANH
when it is not clinically warranted, or not in the best interest of the patient, or
the state, but most are unwilling to do so (23). Sahm et al. reviewed the Ger-
man position on passive versus active euthanasia and the distinction between
palliative care and aid in dying and found that there was confusion among
most regarding the differences. A decision not to act is still an act, thus not pro-
viding ANH is no different than removing ANH, and this implies that all direct
or indirect methods should be legally sanctioned (24).
Tucker et al. reported on the new ‘‘Medical Right’’ or the influence of
religious fundamentalist beliefs in medical ethics, which limit the provision
of choices and information to patients at the end of their lives. The influence
of fundamentalist views into clinical decision-making and provision of infor-
mation to patients extends to provider’s failure to explain a patient’s right to
choose to forgo ANH or the process of Voluntary Stopping of Eating and
Drinking (VSED). It also curtails the provider’s ability to refuse to perform
352 R. A. Heuberger

TABLE 2 Decisions Resulting from Court Cases Involving ANH in Incompetent and
Competent Patientsx
Court case Decision
Plaza Health 1984 (US)y Competent elderly have a right to refuse to eat and=or have a
tube placed for feeding.
Elbaum 1989 (US)
Q
Moneys may not be collected for continued ANH when the
continuation is against the wishes of the patient or the
surrogate.
Cruzan 1990 (US)y 1. ANH is a ‘‘medical treatment.’’
2. A ‘‘surrogate’’ can voice the wishes of a patient and request
withdrawal of ANH.
3. ‘‘Denial of personhood to preserve the sanctity of life’’ is not
appropriate and removal of ANH is permissible if the patient
wanted it done.
Bland 1993 (UK)z Discontinuation of ANH when recovery is not possible is in the
best interest of the patient.
Glucksberg 1997 (US){
Physician-assisted suicide is not a constitutional right of the
patient. Choosing to forgo life-sustaining treatment is.
Vacco 1997 (US)X
Provision of pain medication (which would hasten death) and
deep sedation with withdrawal of ANH may be authorized
by states to prevent suffering in a dying person upon his or
her request.
Gardner 2001x
(Australia) There is no imposition of obligation to provide ANH to dying
persons and in the absence of advance directives or a
surrogate, the physician may withdraw ANH on the basis
that it is inappropriate in the current clinical situation for an
incompetent older adult.
Oregon Revision Statute
Death with Dignity Act
2004 (US)^
‘‘Assisted Suicide’’ is permissible with ‘‘an incurable,
irreversible disease that has been medically confirmed and
will with reasonable medical confirmation produce death
within six months.’’
Shiavo 2005 (US)
Decisions regarding withdrawal of ANH must reside with only
one guardian or surrogate in those incompetent persons
without advance directives.
y
American Dietetic Association. Position of the American Dietetic Association: ethical and legal issues in
nutrition, hydration and feeding. J Am Dietet Assoc. 2008; 108:873–82.
x
Ashby MA, Mendelson D. Gardner; re BVW: Victorian Supreme Court makes landmark Australian ruling
on tube feeding. Med J Austr. 2004; 181:442–5.
z
Ashby M, Stofell B. Artificial hydration and alimentation at the end of life: a reply to Craig. J Med Ethics.
1995; 21:135–40.
{
Bernat JL. Ethical and legal issues in palliative care. Neurol Clinics. 2001; 19:969–87.
X
Cantor NL. Glucksberg, the putative right to adequate pain relief, and death with dignity. J Health Law.
2001; 34:301–33.
Q
Goodhall L. Tube feeding dilemmas: can artificial nutrition and hydration be legally or ethically withheld
or withdrawn? J Adv Nurs. 1997; 25:217–22.

Mendelson D, Ashby M. The medical provision of hydration and nutrition: two very different outcomes
in Victoria and Florida. J Law Med. 2004; 11:282–91.
^
Orentlicher D, Callahan CM. Feeding tubes, slippery slopes, and physician-assisted suicide. J Legal Med.
2004; 25:389–409.

medical procedures or institute technological interventions, such as feeding
tube insertion. The ‘‘Right to Know End of Life Options Act,’’ passed in
California in 2008 met vehement opposition, despite its seemingly innocuous
dictate of ensuring that dying patients will be told their diagnosis, their
options, and their timeframe until death, when they want to know this infor-
mation (25). Communication between provider and patient regarding EOL
issues is tantamount and should not be obscured by legal misconceptions
or fears of litigation (26).
Ethical Issues in End of Life Care
Despite the knowledge that starvation and dehydration do not contribute to
patient suffering at the end of life, and in fact may contribute to a comfortable
passage from life, the ethics of not providing ANH continue to be hotly debated
(27). Many investigators have found that dying persons overwhelmingly deny
thirst and hunger; and application of lubricants or provision of ice chips and oral
hygiene alleviate many xerostomic complaints (28). Provision of oral food and
fluids should be strongly encouraged, as it gives comfort, pleasure, a sense of
autonomy, and dignity and is viewed as essential care giving (29).
There has been little evidence that ANH extends the quantity of life, and
in fact it may decrease quality of life in elders close to death (30). Provision of
ANH may lead to false hope for the patient, his or her family, and the prac-
titioner, which can be viewed as unethical (31). In a survey of physicians and
surrogate decision makers at 288 institutions, the majority erroneously
believed that ANH would provide the benefits of prolonged life, less aspir-
ation, ease of symptoms, ease of medication provision, and improved
nutritional status (p 0.05, p 0.001, p 0.05, p 0.001, p 0.05, respec-
tively) (32). In a survey of practitioners in residential facilities, the majority
reported that ANH should be provided to prevent starvation at the end of life
(p 0.001), and the majority reported feeling ill-informed and unsure about
ANH sequelae in the dying older adult and felt unable to communicate about
these issues to family and surrogates (p 0.03) (33). Practitioners must be
able to address ethical issues surrounding ANH at the end of life. A frame-
work for open communication regarding ethics near death can be found in
Table 3. Providing information to patients and their families on all the
choices for treatment at the end of life is essential.
Several investigators have argued that provision of sedation without arti-
ficial hydration is tantamount to slow euthanasia and is unethical (34, 35).
Others believe that dehydration at the end of life is natural, ethical, and
imperative, with or without sedation (36). In a case series report, Quill
et al. described strategies for bridging the gap between both camps by iden-
tifying an alternative; namely patient choice to forgo food and fluids with a
request for terminal sedation (37). Withholding food, fluids, and ventilation
in a patient who has requested and received high doses of sedatives does
354 R. A. Heuberger

result in a hastened death, which begs ethical, legal, and moral questions (38,
39). This is seen as ‘‘the slippery slope’’ of ANH withdrawal or withholding
(40, 41). Justification for such actions can be found in patient autonomy
and practitioner beneficence as long as the patient who requests these
TABLE 3 Questions to Ask Regarding the Ethics of Providing ANH at the End of Life{y
xz
Process Question
Framing 1. Is the patient able to make autonomous decisions?
2. Are the patient’s choices in line with professional assessment of beneficence?
3. Are there conflicts in an ethical or moral sense?
4. What is the nature of the decision that needs to be made?
Data collection 1. What are the facts regarding diagnosis, prognosis, and treatment outcome for
this patient at this point in time?
2. What are the religious, cultural, social, spiritual, and personal issues for this
particular patient?
3. What is the degree of physical, psychological, and spiritual suffering that the
patient is experiencing?
4. Is the patient clinically depressed, and if so, is it influencing his or her
decision-making abilities? Will treatment of the underlying depression result in
a different outcome?
5. Is the patient demented? If so, does the harm of providing ANH outweigh the
benefit?
Decision-making 1. Is the patient or a surrogate making the decision?
2. Is there adequate information on the values, preferences, and wishes of this
patient?
3. What clinical options have been outlined?
4. Have the ethics of each course of action been weighed and their true intent
delineated (e.g., fiscal consequences to the family determines removal of
ANH)?
Determinism 1. Has efficacy, benefit, and informed choice been conveyed to all involved in
the decision-making process?
2. Has conflict between opinions of professionals, the patient, the surrogate, the
family, and any other entity been articulated?
3. What steps have been taken to resolve these conflicts?
Individuality 1. Has every patient been treated as a unique case?
2. Has a blanket approach to provision, withholding, and withdrawing ANH
been taken? Have institutional policies, procedures, and culture been
adequately evaluated to prevent a blanket approach to care?
3. Is the decision right for this particular patient at this particular time and in this
particular place?
4. Has the decision been re-evaluated on a daily or even hourly basis?
5. Has patient autonomy been sacrificed for sparing professional and=or family
distress?
6. Have steps been taken to ensure that stopping ANH has not resulting in
stopping care?
7. Has open ongoing communication been central to the process?
8. Has adequate support been provided to the patient, the family, and the staff to
ensure successful outcome, regardless of what course of action is taken?
{
Bennett-Jacobs B, Taylor C. Seeing artificial hydration and nutrition through an ethical lens. Home
Healthcare Nurs. 2005; 23:739–43.
y
Becker R. Providing hydration at the end of life: ethics and practice. Nurs Rev. 2008; 104(Suppl. 9):15.
x
Ohlenberg E. We withdrew nutrition—not care. RN. 1996; 59:36–40.
y
Mathes MM. Withholding and withdrawing nutrition and hydration by medical means: ethical perspec-
tives. MEDSURG Nurs. 2001; 10:96–9.

practices does not inform his or her provider that he is intentionally trying to
hasten his own death (42). Thus, physicians are not legally, morally, or ethi-
cally guilty of assisted suicide, as long as the clinical presentation denotes
certain death with discomfort in the near future (43).
ANH IN DEMENTIA CARE
Most persons, when asked if they wished to be kept alive via ANH, if
demented at the end of their lives say no, but in the time of crises, many will
have a tube placed (44). Most persons wish practitioners would start these
discussions earlier than the end of life to help frame the ethics and decisions
of dementia care near death (45). Older patients with dementia pose a
unique challenge for practitioners concerning ANH (46). In demented
patients, one of the first activities to fail is the ability to independently main-
tain oral nutrition and hydration (47). The weight loss, malnutrition, dehy-
dration, and dysphagia seen in these patients is widely recognized as the
entrance into the end stages of the disease (48). It is approximated that more
than half of the oldest old have dementia, many in the advanced stages of the
disease, and ANH is increasingly used to provide sustenance. Many
demented patients will be kept alive long enough to progress to a persistent
vegetative state (49). More than 20% of all older demented patients in the
United States who have either been hospitalized or admitted to skilled nurs-
ing facilities have had tubes placed, and nearly half of those patients died
within a year. The greater the number of hospitalizations and transfers
between facilities, the greater the odds of a tube being placed in a demented
older person (OR ¼ 2.5, 95% CI ¼ 2.0–3.2, p 0.01) (50).
Provision of ANH in a demented patient often requires restraints to
prevent removal of tubes (51). Two-thirds of nursing home residents will
become agitated and pull their tubes within the first two weeks (52). Some
studies have shown that upwards of 70% of dementia patients are fitted with
mittens or other forms of undignified restraint for protection from tube pull-
ing (53). Restraints may also limit mobility, increase anxiety and combative
behaviors, increase skin abrasion and breakdown, decrease socialization,
and engender other functional losses (54). Palliative care provision is ethi-
cally bound to prevent such suffering (55). In an effort to reduce tube place-
ment in demented patients an educational program was instituted and a
Palliative Medical Ethics Consultation Service was established for a network
of inner city hospitals. A dramatic reduction in feeding tube placement was
seen (p 0.002) (56). There has also been some discussion of demented
patients pulling their tubes, as a ‘‘direct expression of their will,’’ which
should be honored and ANH subsequently withdrawn (57).
Many practitioners feel that an impaired patient is at the mercy of his or
caregivers and ANH should be provided, continued, and defended as a fun-
damental obligation of basic care (58). Many practitioners are misinformed
356 R. A. Heuberger

about the benefits of tube feeding in advanced dementia, with no appreci-
ation for the harm (59). Practitioners, even geriatricians, do not know and
do not inform surrogates of the long-term hazards of tube feeding a
demented patient, such as tube pulling, infection, aspiration, or other conse-
quences (60). In a survey of physicians, a hierarchical regression evidenced
that tube placement was recommended for demented patients at risk for
aspiration pneumonia (OR ¼ 0.99, 95% CI ¼ 0.98–0.99, p 0.05), diagnosed
dysphagia (OR ¼ 1.82, 95% CI ¼ 1.25–2.65, p 0.001), weight loss
(OR ¼ 1.89, 95% CI ¼ 1.33–2.7, p 0.001) to prevent uncomfortable death
(OR ¼ 1.70, 95% CI ¼ 1.17–2.48, p 0.01) and solely due to diagnosis of
end stage dementia (OR ¼ 1.87, 95% CI ¼ 1.23–2.83, p 0.01) (61). Unfortu-
nately there is little acknowledgement of terminal dehydration and starvation
being naturally anesthetic (62–63).
There is no data to support the use of ANH in advanced dementia (64).
Families who are uninformed are opting for Percutaneous Endoscopic Gas-
trostomy (PEG) tube placement with increasing frequency, such that 30%
of all PEG tubes are placed in patients with dementia and more than 10%
of institutionalized demented patients are tube fed (65). Eggenberger pro-
posed an ethical framework for practitioners to assist families and surrogates
with decisions regarding ANH for dementia. The author suggested providing
information on the hazards of ANH, clearly communicating the prognosis,
describing the benefits of natural diminution of hydration and nutrition,
and ethically describing and focusing the family’s attention on ‘‘quality of
life’’ (66). A Cochrane Review of ANH in advanced dementia patients found
that there was a significant void in the scientific literature regarding quality of
life indicators and hazards analysis in this population, particularly in the area
of PEG and Nasogastric (NG) tube feeding (67). This makes it ethically diffi-
cult to convince families of the hazards and decrements in quality of life for
demented patients with provision of ANH. Evidence needs to be readily
available to practitioners for educational purposes (68).
Clinical Issues in End of Life Care
Artificial feeding and hydration can be done in a variety of ways. Some of the
procedures are less invasive than others, and costs of feeding and hydrating
vary dramatically from procedure to procedure (69). Risks also vary from
method to method, with surgical procedures or intravenous methods being
riskier in an older person. Feeding methods include Nasogastric or Nasoduo-
denal (NG, ND) tube feeding, Percutaneous Endoscopic Gastrostomy (PEG)
tube feeding, surgical placement of the feeding tube to the duodenum or
jejunum, and Peripheral or Total Parenteral Nutrition (70). Hydration meth-
odologies include using hypodermoclysis, rectal fluid infusion, and intra-
venous (IV) hydration peripherally or through catheterization of the
sub-clavian vein (71). The latter is known as placing a central line, which

is often fitted with several ports, so that a variety of substances can be infused
simultaneously (44).
Ratios of nursing staff to patients at the end of life are related to dehy-
dration and weight loss (72). Societies for enteral and parenteral nutrition
worldwide have issued statements regarding the unacceptability of initiation
of aggressive measures such as tube or IV feeding in geriatrics, if it is
done solely to facilitate care with short staffing, to save time or placate
family=staff (73). Provision of oral nutrition and hydration should be per-
formed with patience, care, and time, whenever physiologically possible.
NON-ORAL, NON-SURGICAL TUBE FEEDING
Non-oral feeding includes less invasive measures such as a nasogastric tube,
where a flexible plastic tube is inserted through the nose, down the esopha-
gus, and into the stomach. A longer tube can be driven down past the
pylorus to the duodenum of the intestine in the event that the stomach is
not functional (74). These tubes are easily displaced, pulled, or inefficient
in a confused older adult. The risk of aspiration is also heightened, even
more so than careful oral feeding in this population (75). In a prospective
study of mortality following NG tube feeding initiation in frail elderly, 65%
died within 6 months of the tube insertion. Significant electrolytic distur-
bances were seen following NG feeding from baseline (p 0.005) (76).
NON-ORAL, SURGICAL TUBE FEEDING
A more invasive procedure includes Percutaneous Endoscopic Gastrostomy
(PEG) tube placement. There are three methods for placing the tube: endo-
scopic, surgical, or radiological (77). The most common is endoscopic, where
an opening through the abdominal wall is made, and using endoscopic surgi-
cal procedures, a tube is fitted into the opening or stoma. Open surgical pro-
cedures are sometimes required for tube placement. This tube is used to
administer formula that is appropriate for specific conditions directly to the
stomach (78). In the event that the stomach is not functional, a tube can be
placed further down in the digestive tract, so the duodenum or the jejunum
is accessible. Formulas are available with the appropriate stage of digested
macronutrients for the section of the gastrointestinal tract that is viable (79).
In a state-wide referendum for long-term care facilities, patient preferences
for tube insertion were recorded and immediately translated into a ‘‘Physician
Order for Life Sustaining Treatment’’ (POLST). Patients at participating facilities
were educated about feeding tubes, and their preferences for EOL tube inser-
tion were documented and honored. The program was associated with signifi-
cant increases in tube refusal and subsequent withholding of ANH by providers
at the end of life (80). Meta analyses show PEG placement has a negative effect
on survival times in terminal older adults. Pooled proportions for survival post
358 R. A. Heuberger

tube insertion were: 1 month ¼ 0.81 (95% CI¼ 0.74–0.88), 2 months ¼ 0.70
(95% CI¼ 0.65–0.74), 6 months ¼ 0.56 (95% CI¼ 0.20–0.92), 1 year ¼ 0.38
(95% CI¼ 0.26–0.49), revealing a progressive decline (81).
In an attempt to determine which clinical indices are predictive for tube
feeding benefit among older persons, a retrospective study of all admissions
at several facilities was performed. In those 80 years or older, ANH was asso-
ciated with increasingly negative outcomes that were accurately predicted
(90% positive predictive value) by albumin, pre-albumin, and C-Reactive
Protein levels upon admission (82). Several benefits are seen with starvation
including:
1. deprivation leads to endogenous opioid production,
2. ketosis produces somnolence and euphoria,
3. reduction in gastric distention decreases peptide activation of hypothala-
mic receptors,
4. reduced urea cycle metabolites results in less sensation, and
5. hypernatremic conditions decrease nociception (83, 84).
Figure 1 depicts a framework for use of tube feeding in geriatrics. Despite
evidence to the contrary, many providers feel that ANH is still an ‘‘ordinary’’
expression of caring in vulnerable populations such as dying older adults
(85, 86). Such feeding modalities may be seen as an obligatory medical treat-
ment no different than the administration of pain medication to reduce suf-
fering (87, 88).
NON-ORAL HYDRATION
Oral hydration at the end of life is difficult to accomplish, the staff time
and costs required to provide oral fluids and ice chips and to ensure
adequacy are prohibitive (89, 90). Older adults have difficulties maintain-
ing hydration. Xerostomia, due to a variety of factors such as hyposaliva-
tion, body water deficits, medications, and pathophysiological conditions
is seen (91). Arguments exist for and against provision of non-oral
hydration at the end of life (92). Arguments against hydration include life
prolongation without symptom amelioration, increased use of urethral
catheterization and urinary tract infection, greater nausea, vomiting, secre-
tions, edema, ascites, skin breakdown, and ‘‘death rattle.’’ Death rattle is
the noise produced by secretions in the airways, generally seen in dying
patients (93). Dehydration is considered a natural anesthetic, and par-
enteral hydration can limit patient mobility and cause unnecessary dis-
comfort (94). Arguments for non-oral hydration include decreasing
toxicity from drug metabolites (usually opioids), decreasing nitrogenous
waste accumulation, and providing the appearance of ‘‘doing something’’
even though there may be little value (95). Vullo et al., in a prospective

FIGURE 1 Decision tree for tube feeding.xyz
360 R. A. Heuberger

study of dehydration in terminal patients, found that serum electrolyte
levels and ratings of comfort remained within normal limits despite
marked dehydration and impending death with no provision of fluids
(p 0.05, p 0.05) (96). Soden et al. did not find longer survival times
in hydrated versus dehydrated patients at the end of life (97).
Hypodermoclysis, also known as subcutaneous fluid administration, is a
method of artificial hydration that has been used extensively for the past two
decades in older adults. Considered less dangerous than intravenous or cen-
tral line administration, fluids are infused through a butterfly needle into the
subcutaneous tissues. While there can be reactions at the site, localized
edema, or infection, it is considered safe, effective, and less expensive than
other methods (98). Electrolyte solutions are used to prevent third spacing,
and infusion rates can range from 120–500 ml=h. In a survey of patients
and families in EOL care, it was found that hypodermoclysis was viewed less
effective than IV fluids, when that was not the case. Patients and families
were under the impression that when IVs were used, the amount, efficacy,
and hydration provided by IV fluids was superior to that seen with hypoder-
moclysis, even though the amount, efficacy, and hydration were the same.
The use of a butterfly needle was thought to be less effective, perhaps due
to its decreased visibility and invasiveness (99).
Rectal hydration (proctoclysis) can also be used when resources for sub-
cutaneous routes are scarce. Tap water can be used at rates of 100–400 ml=h,
and aside from leakage there are few adverse effects (100). Tubes, such as
NG, ND, PEG, or PEJ provide an easy route for fluid administration if already
in place. Peripheral or central catheterization expressly for intravenous
hydration is rarely recommended at the end of life (101). If a line is already
in place, then IV provision of fluids is standard. Intravenous infusion of fluid
can range from 250–3000 ml, and often this route of administration does not
counter the xerostomia exhibited by dying patients (102). In a national sur-
vey of Japanese providers, it was found that 50% were aware of the failure
of IV fluids to overcome xerostomic discomfort. Educational programs
increased the likelihood of improved oral care and proper techniques for
amelioration of xerostomia (lubrication, ice chips, and sips of water) for
95% of the providers who took part (103).
TOTAL PARENTERAL NUTRITION AND HYDRATION
This method of feeding and hydration requires the older adult to undergo the
insertion of a catheter and ports to the sub-clavian vein in a clinical setting.
This procedure is considerably more expensive than other routes. Central line
placement increases the risk for sepsis, air emboli, line pulling, and other com-
plications (104). Parenteral nutrition and hydration should only be considered
in patients who expressly desire this route and whose expected survival is
more than 3 months (105). Nutrients and fluids are infused at tolerable rates

along with medications, electrolytes, and micronutrient mixtures. Consti-
pation, nausea, xerostomia, and other symptoms may worsen despite
adequacy using this route (106). Several reviews of TPN provision at the
end of life in older persons have shown no improvement in survival (107).
Religious Issues in End of Life Care
Spiritual beliefs influence choices regarding EOL care. In a broad sense, spiri-
tuality encompasses religious beliefs, existentiality, and mysticism. In the
United States 90% of Americans believe in a deity or ‘‘higher power’’; 66%
pray regularly and=or belong to a religious entity; 60% acknowledge religion
as being central to their lives; and 82% maintain that there is a need for spiri-
tual advancement in themselves and others (108). In a study of older inpati-
ents with terminal illness, 90% reported using religion to cope (109). Spiritual
conviction may shape a person’s desire to prolong life, to avoid punishment
in the afterlife, or, conversely, to hasten death and enter the afterlife, which
he or she believes, will relieve all pain and suffering (110).
Spiritual beliefs also influence EOL decisions made by health profes-
sionals for their patients. Studies have shown that the providers’ degree of
spirituality results in differences in the endorsement of euthanasia,
physician-assisted suicide, and use of technological advances to prolong
life (111). There are guidelines from the American Medical Association, Joint
Commission on Accreditation of Healthcare Organizations, and the World
Health Organization regarding respect for the spirituality of patients and
the influence of spirituality on quality of life and EOL care (112–114). Fam-
iliarity with these guidelines aids in the provision of information to the older
adult and his or her family, when faced with death. Similarly, it informs pro-
viders on how to react when a patient (or his or her surrogate) uses religious
beliefs to justify EOL care decisions in the face of futility (115). Such justifica-
tions may include ‘‘[my deity] will grant a miracle’’ or ‘‘We cannot interfere
with [my deity’s] plan for us.’’ It is beyond the scope of practice for most
nutritionists to address issues of spirituality and decision making at the end
of life (116). Referral to a more appropriate person, such as a hospital chap-
lain or other clergy member, must be made. It is, however, within the realm
of medical care providers, including nutritionists, to have some knowledge of
different belief systems, respect those systems, and know who to contact
should the need arise (117).
In the following sections, we explore some of the basic belief systems of
the most commonly encountered religions with regards to EOL. This is done
with full acknowledgement that each worship community and, indeed, each
individual may have a unique set of beliefs. Individuals within any given
belief system may not adhere to all tenets of their religion, and personal
beliefs and choices vary considerably. Personal choices and individual
preferences should guide clinical decision making in all circumstances.
362 R. A. Heuberger

Considerable effort should be made to ascertain what the particular indivi-
dual’s wishes are, regardless of his or her recorded religious affiliation.
PROTESTANTISM
Western Christianity has so many denominations and observances that one
view on ‘‘EOL care’’ is impossible. The view on death in and of itself is more
unified; with most believing that impending demise must be framed in the
opportunity for repentance. If ANH is used to delay death and the opport-
unity for repentance is lengthened, or if it prolongs the time for penitence
and increases the odds for amends (without sedation, which clouds judg-
ment), it should be attempted. If the individual has already repented and
prepared for salvation, then technological measures and ANH should not
be employed (118).
The Protestant Church has many denominations, each of which has its
own position on EOL care. The United Methodist Church, the largest branch
of the Wesleyan denominations, has recently come under fire for ‘‘intention-
ally ambiguous’’ wording regarding EOL care, physician-assisted suicide,
and euthanasia. The doctrine cites ‘‘death with dignity’’ as the position
determining the extent to which treatments be applied to the dying older
adult. Furthermore, the Book of Discipline states:
We assert the right of every person to die in dignity, with loving personal
care and without efforts to prolong terminal illnesses merely because the
technology is available to do so. (119, p. 91)
Additional resolutions made by the United Methodist church include: (a)
references to the persistent vegetative state, (b) the ability of the health care
team and family to withhold or withdraw technology, which prolongs life in
the face of futility, and (c) in cases when a person’s suffering and burdens
of living outweigh the benefits in the face of inevitable death, the cessation
of life may be considered (120). The church repeatedly advises respect for
self-determination and overall treatment benefit. Quality of life and legally
documented personal choice trumps technological advancement in EOL care.
More conservative or fundamentalist branches of the protestant church
are more in line with Catholicism in terms of EOL care (121). The belief that
life is a gift from God and that stewardship of that life is the ultimate responsi-
bility of the individual results in a less favorable attitude toward removal, or
withholding, of ANH. Some branches feel that pain and suffering at the end
of life is in line with the suffering of Christ and assists in the preparation for
the transition to the afterlife (122). Provision of fluid and nutrition without
sedation or pain medication may be requested. Consultation with family
and clergy is important, but the wishes of a mentally competent individual
trump the concerns of the health care team, family, friends, and even clergy

for most Protestant denominations. There are exceptions, such as fundamen-
talist groups that eschew all medical intervention, who may forbid all treat-
ment at the end of life, despite a competent patient’s wishes.
CATHOLICISM
The Catholic Church condones palliative care at the end of the older adult’s
life. This is to ensure the dignity of life and make suffering bearable (123).
Any attempt at euthanasia or assisted suicide is prohibited (2). The church’s
position also states that ‘‘extraordinary’’ treatments are not necessary or
required. These include excessively costly, painful, dangerous, or otherwise
unattainable treatments. However, this categorization of ‘‘extraordinary’’
does not include artificial nutrition and hydration, even to someone in a
persistent vegetative state (124).
In 2004, the Pope found that ANH was not ‘‘extraordinary’’ nor was it a
medical act. The church maintained that provision of nourishment by any
means is considered natural and should be administered to reduce suffering
(125). The removal of ANH is considered euthanasia by omission, unless the
case can be made for the artificial nourishment causing significant distress to
the older person. This may be the case when there is a complication, such as
an infection, or in the event that assimilation of nutrients is no longer pos-
sible due to organ system failure (126).
There is considerable controversy regarding the Vatican feeding tube
doctrine. Catholic health care facilities have been forced to change policies
and procedures regarding individual autonomy of decision making for EOL
care (127). It should be noted that a case was made for the failure of ANH
to prolong life and reduce suffering in older persons with advanced
dementia, and there have been discussions among American diocese regard-
ing ANH being extraordinary in these circumstances, but most continue to
defer to Vatican feeding tube policies (128). Furthermore, advanced direc-
tives that are not in line with the Vatican cannot be honored at Catholic
health care facilities. Providers must be cognizant of this when dealing with
older patients and their families when death is near (129).
In statements put forth by the Administrative Committee of the National
Conference of Catholic Bishops in 1993 titled ‘‘Nutrition and Hydration:
Moral and Pastoral Reflections’’ there is considerable attention given to calcu-
lation of ‘‘benefit’’ versus ‘‘burden.’’ The calculations should not include the
fiscal or other costs to the family, the patient, the hospital, or the government
but may include the emotional costs of debilitation when no response or
benefit is seen (130). Scholars in Roman Catholicism also acknowledge that
the afterlife warrants allowing death to occur, and ‘‘doing everything poss-
ible’’ to extend life, including provision of ANH, is counterintuitive, as ‘‘join-
ing’’ the Father, Son, and Holy Ghost is desirable (2). This position differs
from other monotheistic religions, such as Judaism and Islam.
364 R. A. Heuberger

JUDAISM
The Jewish rabbinical doctrine differs slightly between Orthodox, Conserva-
tive, Reformed, and Reconstructionist branches of Judaism in terms of the
beliefs and issues regarding EOL care and ANH as well as on issues of surro-
gacy and decision making for the older adult (131). While recognizing the
inevitability of death, life is held sacred and preservation of life is of great
importance to religious Jews. Jewish medical ethics are the basis for the four
tenets of secular medical ethics (Autonomy, Beneficence, Non-malfeasance,
and Justice) with only slight differences (132). These are outline in Table 4.
Orthodox Judaism espouses ANH as basic care as long as it is done in a
manner that benefits the patient and does no harm. An individual may only
refuse treatment if it does no good or causes suffering or complications (133).
Treatment may only be withheld or withdrawn if it delays death while
causing severe additional pain and suffering, but may not be withdrawn or
withheld if it extends life and causes no additional major complications.
Advance directives can be honored if a Rabbi has been included in their
development (134).
Conservative Judaism interprets Jewish medical ethics to fit modern
society and Reformed Judaism sees Jewish medical ethics as a nonbinding
guide such that the individual’s wishes trumps traditional views (135). Recon-
structionist Judaism spans the spectrum in terms of keeping with Jewish
medical ethics, but all denominations accept intentionally shortening one’s
life (suicide) as forbidden. Jewish medical ethics prohibit assisted suicide
or euthanasia because deliberately speeding up a person’s death is con-
sidered murder (136). Competent patients have the right to forgo treatment
at the very end of life under specific circumstances in Judaism; however
the physician is not under any obligation to tell the patient that he or she
is near death in those circumstances, particularly if telling the patient the
truth will result in additional pain and suffering (135). Withholding the time-
line to death from older patients is permissible and is often encouraged.
Judaism texts explicitly state that providing relief from pain is tanta-
mount for the dying person, and all methods of pain relief must be employed
TABLE 4 The Four Tenets of Jewish and Secular Medical Ethicsx
1. ‘‘Autonomy in Judaism means that an individual’s decision-making is his own, but should
comply with Jewish beliefs and medical authority.’’
2. ‘‘Beneficence in Jewish teaching implies that religious Jews should attempt treatments,
which would extend life and impart benefit.’’
3. ‘‘Non-malfeasance implies that it is the individuals’ responsibility to avoid harming
themselves and their god given bodies.’’
4. ‘‘Justice, which can be interpreted as fairness in limiting or denying treatment or care based
on availability and resources.’’
x
Rosner F, Abramson N. Fluids and nutrition: perspectives from Jewish law (Halachah). Southern Med J.
2009; 102:248–50.

(137). Because dehydration may reduce pain and nutrition support may actu-
ally do more harm then good, many make the case for withholding ANH
because it violates the doctrine regarding delaying death while causing
increased pain and suffering (36). It should be noted, however, that terminal
dehydration, hospice without provision of ANH, and withdrawing or
withholding ANH is not considered aligned with Jewish teachings unless
there is proof of ‘‘goses’’ (less than 72 hours until death) and futility of inter-
vention under any denomination of Judaism. Once death is reasonably
determined to be imminent, the 72 hours prior should be peaceful with no
invasive or uncomfortable procedures. Futility of intervention when
death is imminent should be determined by several qualified medical profes-
sionals (139).
Surrogate decision making by Rabbis, family members, friends, or the
physician has some specific considerations. The Jewish older person who
has no legal documentation, who is not competent, and who has no Rabbi,
friends, or family members who are privy to his or her wants must be dealt
with in a very specific manner. This is important for health care practitioners
to understand and honor as it affects the older adult’s ability to be buried
properly in a Jewish cemetery (139).
ISLAM
Islamic beliefs regarding EOL care include tenets from Islamic law or
‘‘Shariah.’’ Because life on earth is preparation for the afterlife, death is not
to be resisted or feared. Death is not to be hastened, either, and euthanasia
is not permitted in the Islamic religion. Suffering at the end of life is also not
required or condoned. Comfort in dying is important so that the person can
pray and seek forgiveness from a lifetime of excess and from others who he
or she has wronged. Practicing Muslims often require home care so they may
die surrounded by visitors and appropriate religious articles (140). Many
Muslim scholars advocate for withholding ANH when the patient will not
recover, but the withdrawal of ANH is more complex and must be weighed
against the concept of ‘‘doing no harm’’ and decreasing suffering in the fam-
ily since the family must watch over the dying older adult. Muslim family and
friends may experience distress with failure to provide nutrition and
hydration, and this must be factored into the decision (141).
Muslims espouse the right of the patient to forgo ANH, deference to the
advance directive or the family’s wishes, when death is close and inevitable
(142). Muslim law prohibits active euthanasia, suicide, death to avoid suffer-
ing, and choosing to forgo medical intervention when there is a definitive
cure or chance of recovery (143). In addition, a Muslim cleric should be
involved in any discussions regarding ANH and EOL care. There are many
Islamic tenets regarding how to behave in the face of death, how the person
and his or her family must act, how prayer and washing must be handled,
366 R. A. Heuberger

and the hierarchy of who makes decisions and how interactions may occur. It
is important for nutrition professional to be sensitive to these issues and respect
the belief systems as not to bring shame to the family or the patient (134).
HINDUISM
The Hindu religion believes that the soul can be released in a ‘‘good death,’’
which occurs in old age, at the right astrological time, and either in the home
(on the ground) or at the banks of the Ganges river (144). Hinduism is poly-
theistic and involves a transcendent god that lives in all beings. The process
of rebirth is dependent on the person’s acts during his or her lifetime. Free-
dom through death is ‘‘Pravrajya’’ and allows reuniting with the Supreme
Being in a gradual fashion (145). EOL care is seen as a familial responsibility
in Hinduism and is a time of spirituality and ritualized action. Provision of
ANH may be seen as important to a good death when the end is clearly
not near; pain and suffering without the consciousness being clouded by
analgesics may also be seen as tantamount to achieving oneness with the
Supreme Being. Withdrawal or withholding of futile treatments such as
ANH when death is inevitable is permissible, and many Hindus will prepare
themselves for death by fasting (146). It is of interest that the Hindu patient is
usually shielded from his or her diagnoses and any medical decision making;
he does not have the autonomy to request or forgo ANH. This decision is left
to the family and the community as not to taint the patient or his or her
chances for a good death and successful reincarnation (147).
BUDDHISM
Buddhism is commonly practiced in Asian countries and is becoming more
prevalent in Westernized areas. There are several forms of Buddhism. The
two main branches are Theravadin and Mahayana. Mahayana has a subdiv-
ision of Vajrayana or ‘‘Tibetan’’ Buddhism, from which the Dalai Lama is
the most recognized representative. Buddhist beliefs regarding EOL care dif-
fer from most other religions in that tradition dictates that rebirth is tanta-
mount, all who are born will die, cumulative actions during ones lifetime
dictate death and rebirth, and that all beings suffer. It is considered obligatory
to prepare for one’s death and to start early in this preparation (148). The
‘‘consciousness’’ of the being must be allowed to exit the body properly. A
‘‘good death’’ and ‘‘enlightenment’’ is important, and inappropriate provision
of ANH interferes with the attainment of both (149).
Buddhists may allow withholding and withdrawing ANH (150). Spiritual
comfort at the end of life is important in Buddhist tradition, while technologi-
cal extension of life is not (151). Spirituality and wishes regarding ANH in the
context of EOL care for patients practicing Buddhism must be carefully con-
sidered to allow the consciousness to exit the body properly and provide for

a ‘‘good death.’’ Practitioners should aim for consulting with persons familiar
with Buddhist traditions and spiritual needs in the absence of patient or sur-
rogate ability to provide information since it is an essential component of
care in this population (152).
OTHER RELIGIOUS SECTS
There are several fundamentalist religious entities that are opposed to medi-
cal intervention, including ANH (153). The largest of these is the Christian
Scientist movement. Some of the smaller sects, which shun most medical
interventions, include The Body, Church of the First Born, End of Time Min-
istries, Faith Assembly, Faith Tabernacle, Christ Church, Grace Baptist, and
other geographically isolated, fundamentalist congregations. These do not
include Jehovah’s Witness, who believe that blood cannot be transfused,
but ANH is permissible; nor does it include Scientologists, the majority of
whom do not have specific concerns regarding ANH, but rather eschew
psychotropic medication for psychological conditions (154).
Racial, Ethnic, and Cultural Issues in End of Life Care
Belief systems regarding death and dying in general often differ by racial and
ethnic group and cultural orientation. In some cultures, death is celebrated;
in others friends and family are not allowed to speak the name of the dead.
Because of the vast spectrum of differences in terms of death and dying, the
health care provider should consult with the older adult or persons familiar
with the dying older adult’s racial, ethnic, and contextual considerations
before determining appropriate EOL care (155). In the absence of knowledge
regarding any particular person’s cultural and ethnic background and with-
out the individual’s or surrogate informant’s ability to provide some indi-
cation of what should be done, a conservative approach to dealing with
artificial nutrition, hydration, and other medical life-sustaining treatments
should be undertaken (156).
In terms of EOL decision making, Caucasians were most influenced by
medical information and fiscal considerations, while African Americans con-
sidered spiritual input most important (157). Hopp et al. studied racial prefer-
ences and delineations for EOL treatment and found that Caucasians were
more likely than African Americans to have a living will (p 0.001), desig-
nate a Durable Power of Attorney for Health Care (p 0.032), and discuss
treatment preferences before death (p 0.002). Caucasians were more likely
to limit aggressive intervention at the end of life (p 0.007) and withhold
artificial feeding and hydration (p 0.034). Treatment decisions for African
Americans were more likely to incorporate all possible interventions in order
to prolong life (p 0.013) (158).
368 R. A. Heuberger

A qualitative study found that African American women wanted aggress-
ive intervention, feeding tube placement, and medical practitioner decision
making to prolong life. This was in contrast to the Caucasian women sur-
veyed, who were opposed. Hispanic women were found to be in favor of
aggressive intervention but did not want feeding tubes placed (159). Mexican
American men were found less likely to want aggressive measures and were
more concerned about functional abilities at the end of life as opposed to
their female counterparts (160). Asian and Hispanic ethnicity was found to
be a predictor for greater emphasis on surrogate decision making, and all
non-Caucasians were found to be less informed about advance directives
and aggressive treatments near death (161). When European Americans were
compared with Korean Americans, African Americans, and Mexican Ameri-
cans, the Caucasian group was found to be the least likely to accept aggress-
ive EOL care (p 0.001). Mexican Americans were in favor of life extension
through ANH and aggressive intervention (p 0.001). Korean Americans
were in favor of aggressive care (RR ¼ 6.7, p 0.0001) but not for themselves
(RR ¼ 1.2, p 0.45), and African Americans were most likely to want to be
kept alive by artificial means (RR ¼ 2.1, p 0.002) (1). In a study of 4,920
institutionalized older adults, African Americans were far more likely to want
and use feeding tubes. In a main effect logistic regression, dysphagia
(OR ¼ 5.4, 95% CI ¼ 2.7–10.6, p 0.0001) and stroke (OR ¼ 2.8, 95%
CI ¼ 1.1–4.3, p 0.03) were predictive of feeding tube request by competent,
poor, urban Blacks (162).
In a study of Canadian- versus Middle Eastern-skilled nursing facilities,
researchers found that patients with end-stage dementia (n ¼ 376) were intu-
bated and provided with ANH far more frequently in the Middle East. Statisti-
cally significant differences in the numbers of NG and PEG tube fed patients
were seen (19% vs. 52.9% v2
p 0.001) in comparable facilities (137).
In several studies conducted in Taiwan with predominantly Buddhist
patients, it was found that most did not understand that ANH was providing
excess nutrition and hydration at the end of life. Upon explanation, patients
and families wished for a ‘‘good death’’ or withdrawal of ANH (OR ¼ 0.53,
95% CI ¼ 0.37–0.84, p 0.005) (163). It should be noted that in oriental
culture it is not respectful to disclose terminal illness and impeding death
to an elder, making communication difficult. It is also culturally inappropriate
to let an older adult ‘‘starve’’ (164).
Sexual orientation also altered views on EOL care and artificial nutrition
and hydration. The gay community was found to favor physician-assisted sui-
cide, euthanasia, palliative care, and was more likely to have advance direc-
tives and decline ANH or other aggressive measures than non-gay
counterparts (165). Cultural competence is becoming increasingly important
as populations diversify and requires practitioners to integrate culture,
spirituality, religiosity, race, ethnicity, gender, and sexual preference into
the process of EOL care (166).

Personal and Professional Issues in End of Life Care
Many persons at the end of life do not understand that ANH is a medical
intervention and not just provision of food and water (167). In a study of
currently healthy older adults (age l ¼ 79 years), several diagnoses and
EOL scenarios were presented and 86% overwhelmingly rejected the use
of ANH in treatment plans (p 0.001) (168). Physician attitudes shape the
preferences of patients who are less informed about potential interventions
and survival, quality of life, and use of restraints should tube pulling become
an issue (169). Bito et al. surveyed physicians to ascertain attitudes toward
intervention at the end of life. Physicians themselves are unclear about the
course of action in many instances regarding provision of, withholding of,
or withdrawal of ANH and communicating the pros and cons to patients
and families. Physicians who sought clinical ethics consultations were more
likely to withdraw tube feeding and communicate outcomes more effectively
(OR ¼ 6.4, 95% CI ¼ 2.5–16.3, p 0.001) (170). Conflict avoidance in the
instance of a family wishing to override an advance directive or a physician’s
opinion may result in shaping of patient treatments and choices by the
Clinician (15). Physician attitudes, religiosity, and worldview shapes their
opinion on intervention, withholding, and withdrawal of ANH; and this, in
turn, subtly influences patient and family choices (171).
In a study of physicians, it was determined that physicians were no
more likely to have advance directives or documentation limiting ANH for
EOL care than the general population (172). Physicians were more apt to
want ANH and aggressive treatment for themselves, which grew with increas-
ing levels of physical and psychological debilitation experienced with aging
and morbidity (AOR ¼ 2.1, 95% CI ¼ 1.2–3.9 and AOR ¼ 5.3, 95% CI ¼ 1.6–
17.8) (173). Palliative care professionals, who were educated in death, dying,
and comfort care, overwhelmingly support terminal dehydration and star-
vation in opposition to acute care personnel and the families of end-stage
patients (174).
In a mixed method study of health professionals, family caregivers, and
patients regarding tube feeding, quality of life, feeding withdrawal, and
choice, it was found that patients’ perceptions were not similar to those of
their caregivers or the personnel involved in their care. The majority of
patients felt they had no choice regarding tube insertion, did not receive
enough information, and would choose to stop feeding. This is in sharp con-
trast to dietitians who overwhelmingly responded that the patient was given
a choice, was provided information, and feeding should be continued.
Nurses and caregivers fell within those two extremes (175).
In a review of the literature, Bryon et al. referenced several studies that
look at a health provider’s roles in guiding the decision-making process to
initiate, withhold, or withdraw ANH for older adults at the end of their lives
(176). Several contextual issues regarding the practitioner’s role as a guide in
370 R. A. Heuberger

ANH decisions are identified in Table 5. Practitioners should always attempt
to place patients’ personal choice into the forefront of the decision-making
process.
In an effort to understand the propensity for provision of ANH at the end
of life, several reports have indicated that both the public and their health care
providers have ‘‘lost an appreciation for death and dying, with comfort, dig-
nity and meaning at the end of one’s life’’ (177). Competent patient refusal
of ANH has been categorized as ‘‘passive voluntary euthanasia,’’ and many
view attempts at informing the patient and his or her family about the benefits
of refusal as ‘‘assisted euthanasia’’ (178, 179). Health professional’s view of
death as a professional and personal ‘‘failure’’ in Western medicine is trans-
ferred to the patient and his or her family and results in fear and denial, which
in turn leads to opting for aggressive intervention and poor choices for EOL
care (180). In contrast to health care providers, and in the absence of immi-
nent death, older adults were found to view quality of life, independence, dig-
nity, and comfort to be important factors to consider prior to death, while life
at all costs, quantity of life, and control were unimportant (181).
Despite the passage of the ‘‘Patient Self-Determination Act’’ in 1990
requiring that patients be asked about their advance directive, there has been
little increase in discussions and documentation of older adults’ EOL care
decisions (182). Health care providers rarely initiate discussions about EOL
treatment options with competent older adults prior to emergencies. Discus-
sions that ensue post-hospital admission or in close proximity to death sig-
nificantly influence choices made for, or by, the patient. The choice
regarding provision of ANH is influenced by whether a nurse, physician,
or social worker initiated the discussion and whether the provider had been
trained in EOL issues (183).
Israeli physicians, nurses, and social workers were surveyed regarding
their involvement in ANH decision making at the end of life. Physicians
desired the greatest use and social workers desired the least use of ANH.
Social workers in Israel reported the highest involvement in discussions with
TABLE 5 Contextual Issues in the Health Professional’s Role as a Guide During the
Decision-Making Process for ANH Provision at the End of Lifexz
Health professionals should be the patient’s advocate so that decisions made by the physician
or the family are in line with the patients wishes.
Health professionals should be the guide for the patient, family, and the physician so that the
decision is in the patients’ best interest.
Health professionals should be the facilitator of open communication between family, patient,
and physician at a time when issues are complex and fraught with emotion.
z
Adapted from Bryon E, Gastmans C, de Casterle BD. Decision making about artificial feeding in end of
life care: literature review. J Adv Nurs. 2008; 63:2–14.
x
Fins JJ, Miller FG, Acres CA, Bacchetta MD, Huzzard LL, Rapkin BD. End-of-life decision-making in the
hospital: current practice and future prospects. J Pain Symptom Manage. 1999; 17:6–15.

patients and their families regarding the use of ANH and aggressive interven-
tions (184). McFarland et al. found that use of a training curriculum to teach
physicians the value of communication, philosophical difference, and
acceptance regarding death and dying was ineffective. The Education for
Physicians on End of Life Care Curriculum (EPEOLCC) improved knowledge
regarding pain and symptom management, but the other variables remained
unchanged (p 0.001, p 0.001, p 0.10) (185). Pugh et al. found that
among clinicians in the United Kingdom, physicians were more likely to
initiate, continue, and oppose withdrawal of aggressive treatment and ANH
while nurses were opposed to intitiation, continuation, and aggressive mea-
sures in EOL care. Nurses were more likely to consider patient suffering,
belief systems, and the need for open communication and education regard-
ing death and dying. Statistically significant differences between physicians
and nurses were observed regarding ANH provision and withdrawal
(v2
¼ 9.3, p 0.01, v2
¼ 7.4, p 0.03) (186). The European Union has
recently begun to push for transparency of discussions with patients and
their families regarding EOL treatment options, inclusive of euthanasia (187).
Cross culturally, Japanese health care professionals have been studied
extensively regarding attitudes toward ANH in EOL care. The research found
that patient and family wishes regarding ANH were not routinely considered;
health professionals were distressed when ANH was withheld, withdrawn, or
refused; and disagreements between health professionals regarding provision
of ANH were prevalent (188, 189). Miyashita et al. found that the provision of
education to Japanese older persons regarding palliative care in the home
decreased preferences for aggressive EOL treatment and ANH (190). Morita
et al. found ANH was considered a basic standard to be continued until death,
and withdrawal or withholding ANH was not acceptable in a national sample
of less than 6,000 Japanese older adults (191, 192). Japan only recently
developed clinical guidelines for provision of ANH at the end of life (193).
Fiscal Issues in End of Life Care
The research on the costs of ANH provision and EOL care is conflicting and
usually does not distinguish expenditures by age. It is believed that the costs
of caring for older persons are higher than their younger counterparts, even
near death (194). Researchers have sought to refute the assumptions that old
age and dying is a primary contributor to health care expenditures in the Uni-
ted States, due to the burgeoning population of older adults (Table 6).
Pan et al. provided a body of evidence refuting the myths around aging,
EOL care, and decrements in fiscal solvency, as shown in Table 6. Statistical
analyses of health care expenditure growth over time attributable to the
aging population amounted to 7% of the increase, found to be insignificant
in light of total expenditures. Forecasting revealed that healthier aging,
less chronic disease and disability, and overall improvements in health
372 R. A. Heuberger

expectancy would result in less expenditure for older adults until near
the time of death. The expenditures for the year before death remained
stable, and the high costs of ANH and other aggressive treatments were con-
tributory. The authors maintained that the greater the age, the less likely
the use of these measures because of health care rationing based on advanc-
ing age. Half the expenditures for Medicare were in aggressive treatment
in the past 60 days prior to death, but this constituted only 3% of all
expenditures (195).
Several other studies reported vastly different findings. McGarry et al.
(196) found that the economic burden of EOL care bankrupts middle income
and poor women, whose savings are depleted by aggressive medical expen-
ditures for their spouses whom they survive. The costs are estimated to be
upwards of 70% of their total income (196). Similarly, when EOL fiscal bur-
den was examined for both widow and widowers, 63% of income share was
found to be consumed in the EOL care of the spouse, leaving the remaining
family member in poverty. Advance planning with fiscal conservancy was
strongly encouraged (197). A Canadian investigation of inpatient costs at
the end of life found that cost trajectories for treatment including ANH were
substantial; comparable to the 27% of the U.S. Medicare and 12% total health
care budget spent on older adults’ EOL care (198). The costs associated with
PEG tube feeding in older adults in the United States were found to be
upwards of $32,000 annually per patient in U.S. skilled nursing facilities in
the late 1990s (22).
Due to the phenomenon of compression of morbidity and mortality on
aging cohorts and survivorship, a time to death modeling schema was used
to identify changes in expenditures related to EOL care among persons 65
years of age or older by decade to death. The models point to an increase
in non-hospital expenditures, such as skilled nursing and prolonged lag time
to death in the oldest old. While the authors acknowledged that advance
directives, hospice, palliative care, and decreasing utilization of aggressive
measures with advancing age will offset costs, there is still the prospect of
inordinate fiscal burden due to the use of technology in EOL care, such as
ANH (199). Conservative estimations from the mid 1990s suggest that
TABLE 6 Seven ‘‘Myths’’ of Aging, End of Life Care, and Fiscal Solvencyy
1. ‘‘The growing number of older people has been driving the rise in U.S. health care costs.’’
2. ‘‘As the population ages, health care costs will overwhelm and bankrupt the nation.’’
3. ‘‘Limits on EOL care for the very old would save Medicare significant amounts of money.’’
4. ‘‘Aggressive hospital care for the aged is futile and the money spent is wasted.’’
5. ‘‘It is common for older people to receive heroic, high tech treatments at the end of life.’’
6. ‘‘Medicare covers everything that older adults need in terms of their health care.’’
7. ‘‘Advance directives would resolve the dilemma of how aggressively to provide care.’’
y
Pan CX, Chai E, Farber J. Myths of the high medical costs of old age and dying. Int J Health Serv. 2008;
38:253–75.

30 billion dollars would be saved annually by the institutionalization of hos-
pice and advance directives limiting technologies such as ANH at the end of
an older person’s life (27).
Published studies have emerged regarding the use of ethics consulta-
tions with the dying and their families. Substantial cost savings occurred
when the ethics consultation resulted in the removal of ANH, other life
support treatments, discontinuation of diagnostics and monitoring proce-
dures, and specialty consultations. The savings were in the hundreds of thou-
sands of dollars per patient (200). Palliative care and hospice consultation
provides substantial savings on treatment, staffing, and monitoring, including
ANH (201). Integration of palliative care teams into critical care diminished
costs associated with ANH, with discontinuation of ANH by 18% of patients
who saw palliative care personnel versus those who did not (202).
Falls et al., in analyses of ‘‘quality of dying,’’ found fiscal solvency
and cost containment to be important to Americans at the end of life. The
U.S. ‘‘medical model,’’ with its ‘‘emphasis on the use of technology to cure
disease and extend life at all costs’’ is falling out of favor with the Boomer
generation, who want choice, information, and options for death. Palliative
care models abound internationally, and the cost savings and options
they provide have become increasingly attractive to the U.S. health care
consumer (203).
SUMMARY OF ISSUES IN END OF LIFE CARE FOR
THE OLDER ADULT
End of life care is controversial and difficult to discuss. Medical paradigms
result in the use of technology to extend life for as long as possible through
measures such as ANH (204). Quantity of life does not equate to quality of
life, and older adults should be informed of their right to request or forgo
life-sustaining treatments, such as ANH (205). Older adults should be advised
to document their wishes and be educated on concepts of care such as pal-
liation and hospice (206). They should be informed of the natural pro-
gression and anesthetic value of starvation and dehydration in the terminal
stages as well as the lack of benefit of ANH in many circumstances (207).
Older adults should be informed about the risks and burdens of life pro-
longation through artificial means long before emergencies arise and EOL
care is instituted (208). Practitioners must be well informed regarding the
legal, ethical, clinical, religious, cultural, personal, and fiscal aspects of
ANH in the dying older adult (209). Practitioners must be cognizant of their
own biases and make sure that every person is evaluated individually so that
a ‘‘blanket’’ approach is not taken (210). Open communication and informed
choice between providers, patients, families, surrogates, and third party
payers should be the goal for EOL care in older adults (211).
374 R. A. Heuberger

TAKE AWAY POINTS
. Many older persons will not have advance medical directives explicitly
documenting their wishes for EOL care, and even if they do, many will
not have their wishes honored.
. Many older adults are unaware of the care concepts of palliation, hospice,
and home health.
. Many older persons are not aware of the hazards, lack of benefit, or the
burden of care with provision of ANH at the end of life, particularly with
dementia and terminal compromise.
. Many practitioners as well as the general population are unaware of the
complexities, both legal and ethical, in the withholding or withdrawal of
ANH, particularly when there is a surrogate decision-maker and=or the
person’s wishes are not clearly and legally articulated.
. Many practitioners are not well versed in the religious and cultural influ-
ences on care choices at the end of life and have little understanding of
the effect it has on patients and their families.
. Many practitioners are not cognizant of the fact that their own ethical,
religious, spiritual, cultural, and environmental biases influence their pro-
vision of information and open communication about EOL care and
choices available to their patients.
. Many providers as well as the general population have no knowledge of the
costs associated with the provision of ANH and do not consider fiscal
responsibility when instituting technological advances in terminal situations.
. Many providers as well as the general population have failed to discrimi-
nate between ‘‘quality’’ and ‘‘quantity’’ of life and have lost an appreciation
of ‘‘death with dignity.’’
. Many providers fail to use ethical decision-making strategies that are indi-
vidualized for each person, with repeated re-evaluation over time. A blan-
ket approach to provision of EOL care is often institutionalized, which is a
disservice to patients, families, and society at large.
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Artificial Nutrition And Hydration At The End Of Life

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