546890

research-article2014
NCPXXX10.1177/0884533614546890Nutrition in Clinical PracticeSchwartz et al

Special Report
Nutrition in Clinical Practice
Volume 29 Number 6
Gastrostomy Tube Placement in Patients With December 2014 829­–840
© 2014 American Society
Advanced Dementia or Near End of Life for Parenteral and Enteral Nutrition
DOI: 10.1177/0884533614546890
ncp.sagepub.com
hosted at
online.sagepub.com
Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN1;
Albert Barrocas, MD, FACS, FASPEN2; John R. Wesley, MD, FACS, FAAP, FASPEN3;
Gustavo Kliger, MD4; Alessandro Pontes-Arruda, MD, MSc, PhD, FCCM5,6;
Humberto Arenas Márquez, MD7; Rosemarie Lembo James, RD, CNSC, LD/N8;
Cheryl Monturo, PhD, MBE, ACNP-BC9; Lucinda K. Lysen, RD, LD, RN, BSN10;
and Angela DiTucci, RD, LDN11

Abstract
Based on current scientific literature, gastrostomy tube (G-tube) placement or other long-term enteral access devices should be withheld in
patients with advanced dementia or other near end-of-life conditions. In many instances healthcare providers are not optimally equipped
to implement this recommendation at the bedside. Autonomy of the patient or surrogate decision maker should be respected, as should the
patient’s cultural, religious, social, and emotional value system. Clinical practice needs to address risks, burdens, benefits, and expected
short-term and long-term outcomes in order to clarify practice changes. This paper recommends a change in clinical practice and care
strategy based on the results of a thorough literature review and provides tools for healthcare clinicians, particularly in the hospital setting,
including an algorithm for decision making and a checklist to use prior to the placement of G-tubes or other long-term enteral access
devices. Integrating concepts of patient-centered care, shared decision making, health literacy, and the teach-back method of education
enhances the desired outcome of ethical dilemma prevention. The goal is advance care planning and a timely consensus among health
team members, family members, and significant others regarding end-of-life care for patients who do not have an advance directive and
lack the capacity to advocate for themselves. Achieving this goal requires interdisciplinary collaboration and proactive planning within a
supportive healthcare institution environment. (Nutr Clin Pract. 2014;29:829-840)

Keywords
nutritional support; aged; dementia; ethics; terminal care; enteral nutrition

Studies worldwide consistently demonstrate a very high mortal- Executive Summary

ity rate in older adults with advanced dementia who have feed-
ing tubes.1-4 The potential for inadequate communication
between practitioners and patients, family members, significant
others, caregivers, and surrogate decision makers, as well as a
difference in ethical values may lead to beginning therapies that
do not benefit the patient. The application of unnecessary thera-
pies may dramatically increase the cost of healthcare.
In developing this special report, the International Clinical
Ethics Section (ICES) of the American Society for Parenteral
and Enteral Nutrition (A.S.P.E.N.) advocates for weighing the
potential benefits derived from a particular mode of nutrition
support therapy against inherent risks and burdens within a
patient-centered framework of culture, religion, ethical princi-
ples, and personal values. The professional judgment of the
attending healthcare professional, with input from the interdis-
ciplinary team and considerate of the patient’s wishes, is the
primary component of quality healthcare.
Laws of the jurisdiction in which the patient is located may
also impact the range of options available to healthcare profes-
sionals. Legal aspects of this issue are not covered in this
report.
The following approach is recommended for patients with
advanced dementia or other near end-of-life conditions who
From 1Providence Saint Joseph Medical Center, Burbank, California; 2Atlanta
Medical Center, Atlanta, Georgia; 3Division of Pediatric Surgery, Ann &
Robert H. Lurie Children’s Hospital, Chicago, Illinois; 4Clinical Nutrition
Service and Nutrition Support Unit, Austral University Hospital, Buenos
Aires, Argentina; 5Christus University School of Medicine, Fortaleza, Ceara,
Brazil; 6Baxter Healthcare, Singapore, Singapore; 7Intestinal Failure Unit,
Sanvite, Zapopan, Mexico; 8Martin Health System, Stuart, Florida; 9West
Chester University of Pennsylvania, West Chester, Pennsylvania; 10Nutrition
Support Consultant, Chicago, Illinois; and 11Veterans Affairs Boston
Healthcare System–West Roxbury Campus, Boston, Massachusetts.
Financial disclosure: None declared.
Appendices A-C are available as an online data supplement for this paper
at www.ncp.sagepub.com.
This article originally appeared online on October 7, 2014.
Corresponding Author:
Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN,
Providence Saint Joseph Medical Center, 501 South Buena Vista Street,
Burbank, CA 91505, USA.
Email: denisebairdschwartz@gmail.com

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830 Nutrition in Clinical Practice 29(6)
are being considered for gastrostomy tube (G-tube) placement.
Throughout this paper, the term G-tube refers to any long-term
enteral access device:
1. The decision to withhold or withdraw tube feeding in
end-stage illness is supported by current scientific
evidence.
2. Advanced dementia should be seen by the healthcare
team as a terminal illness, and healthcare team mem-
bers should clearly communicate this perspective to
the patient’s family, significant others, caregivers, and/
or surrogate decision makers.
3. A thorough discussion should take place with the
patient, family, significant others, caregivers, and/or
surrogate decision makers. The conversation should
cover the most updated evidence-based findings
regarding short-term and long-term risks, burdens, and
benefits.
4. Alternatives such as assisted oral feeding and other
innovative oral interventions should be thoroughly
explored and discussed with the patient, family, sig-
nificant others, caregivers, and/or surrogate decision
makers.
5. The autonomy of the patient or surrogate decision
maker should be respected. Emphasis should be placed
on functional status and quality of life. An essential
aspect of the process involves cultural, religious,
social, and emotional sensitivity to the patient’s value
system. A time-limited trial of nasogastric feedings
may be considered if a decision to proceed in the future
with a G-tube is made.
6. The final informed decision should be reached via a
patient-centered approach, including family, significant
others, caregivers, and/or surrogate decision makers.
7. Clinicians in healthcare institutions, both hospitals and
long-term care facilities, should develop a process that
is interdisciplinary, collaborative, proactive, integrated,
and systematic in order to facilitate decision making
that engages the patient, family, significant others, care-
givers, and/or surrogate decision makers. The process
should promote advance directives that provide health-
care based on the patient’s wishes and best interest.
Overview of Advanced Dementia and
Other Near End-of-Life Conditions
People with advanced dementia generally experience eating dif-
ficulties in conjunction with profound loss of memory, verbal,
and functional abilities due to the underlying neurodegenerative
process. Patients with advanced dementia are dependent on oth-
ers for all aspects of their care, and must rely on others to make
decisions about the types of care they receive.5 Many disorders
can cause dementia. Some, such as Alzheimer’s disease or
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Huntington’s disease, lead to a progressive loss of mental func-
tions. Other types of dementia can be halted or reversed with
appropriate treatment. People with moderate or advanced demen-
tia typically need constant care and supervision to prevent them
from harming themselves or others. They also may need assis-
tance with daily activities such as eating, bathing, and dressing.6
Numerous articles have been published about advanced
dementia and use of feeding tubes, yet there remains a high con-
sistency in finding a lack of efficacy in tube feeding in this
population. Current scientific evidence suggests that the poten-
tial benefits of tube feeding do not outweigh the associated bur-
dens of treatment in persons with advanced dementia. Studies
consistently demonstrate a very high mortality rate in older
adults with advanced dementia who have feeding tubes.1-4
Dementia is a leading cause of death in the United States
but is under-recognized as a terminal illness.7 The clinical
course of long-term care facility residents with advanced
dementia has not been well described. In one study, researchers
described 323 long-term care facility residents with advanced
dementia and their healthcare proxies for 18 months in 22
long-term care facilities.7 Data were collected to characterize
the residents’ survival, clinical complications, symptoms, and
treatments, and to determine the proxies’ understanding of the
residents’ prognoses and the clinical complications expected in
patients with advanced dementia. Pneumonia, febrile episodes,
and eating problems were found to be frequent complications
in patients with advanced dementia, and these complications
were associated with a high 6-month mortality rate.7
Other near end-of-life conditions include chronic disease
processes that progress to an end stage, leaving the patient with
only months, weeks, or even days to live. Acute illnesses can
also progress rapidly in the intensive care unit, potentially
causing irreversible organ damage; with these constraints there
are significant risks and burdens associated with G-tube place-
ment that are greater than the benefits to the end-of-life patient.
Table 1 lists several types of discomfort commonly experi-
enced by end-of-life patients with advanced dementia with or
without artificial nutrition and hydration (ANH).
Literature Review on Decisions to
Withhold or Withdraw Tube Feeding
Reviews of evidence regarding the clinical risks, burdens, and
benefits of ANH for patients with advanced dementia and termi-
nal illness have been published by A.S.P.E.N.13 At the cornerstone
of decision making is the concept of the “troubling trichotomy”:
(1) “can” of nutrition support technology, (2) “should” of bioeth-
ics, and (3) “must” of the law.13
Many peer-reviewed articles are available in the scientific
literature on the topic of G-tube placement in patients with dif-
ferent levels of dementia or in the terminal phases of their
lives.1,6,8,14-18 Numerous authors have addressed the issue of
forgoing G-tubes in patients with advanced dementia and at the
Schwartz et al 831

Table 1.  Advanced Dementia and End-of-Life Suffering/Discomfort With or Without ANH.

Author Findings/Conclusions
Barrocas, Geppert, Artificial hydration of terminally ill patient can lead to discomfort due to:
Durfee, et al8 •• Fluid overload
•• Pulmonary and generalized edema
•• Shortness of breath
•• Use of catheters
•• Additional laboratory tests and blood draws
•• Administration of medications and electrolytes
•• ANH complications
•• Use of physical restraints
ANH may be discontinued on clinical and ethical grounds provided such determination is not in conflict with:
•• Existing laws
•• Institutional policies
•• Consent/consensus of decision makers
Scientific evidence in the physiology of patients with brain death, coma, or PVS indicates that these patients
do not experience thirst or hunger, and therefore not likely to suffer.
Ciocon, Silverstone, ANH in dying patients:
Graver, Foley9 •• Increased diarrhea, nausea, and vomiting
•• Caused repeated aspiration pneumonia
Ellenshaw, Sutcliffe, Fluids cause or exacerbate:
Saunders10 •• Dyspnea
•• Bronchial secretions
•• Urinary frequency
•• Bladder distension
•• Pulmonary edema/effusions
•• Ascites
Friederich11 Adverse occurrences with ANH:
•• Infections at surgical site
•• Perforations
•• Leakage
•• Does not prevent skin breakdown or pressure ulcers despite greater protein intake
McCann, Hall, Ketosis and dehydration, in absence of ANH, provide:
Groth-Juncker12 •• Anesthetic/sedative effects to the terminally ill or advanced demented patients
•• Benefit, as these patients may retain the ability to experience discomfort or suffering

ANH, artificial nutrition and hydration; PVS, persistent vegetative state.

end of life (Table 2), yet a gap exists between evidence-based
facts and practice based on the risks, burdens, and benefits of
expected short-term and long-term outcomes.
There are a number of resources8,30,31 for the development
of guidelines to address this sensitive issue in combination
with updated data specific to G-tube placement in patients with
advanced dementia or near the end of life. ESPEN Guidelines
on Enteral Nutrition32 address some of the ethical and legal
issues that have become an increasing part of the clinical deci-
sion-making process in providing nutrition support therapy.
These guidelines include ethical and legal aspects of enteral
nutrition in relation to dementia and the dying patient. See
Appendix A online.
According to the ESPEN Guidelines on Enteral Nutrition:
Geriatrics,33 the outcome and success of nutrition therapy in
demented patients are strongly influenced by the severity of
the disease, the kind and extent of comorbidities, and by the
patient’s general condition. For patients with terminal
dementia (eg, irreversible, immobile, unable to communi-
cate, completely dependent, lack of physical resources) tube
feeding is not recommended. The decision for or against tube
feeding must always be a personal decision for each patient,
made together with caregivers, legal custodians, family,
healthcare providers, and therapists. When in doubt and
when legal advice may be necessary for definitive decision
making, the decision in each case must be made on a case-
by-case basis.
National healthcare organizations that are not specifically
nutrition focused also have developed position statements
related to G-tube placement in patients with dementia or near
end of life (Table 3). These documents provide support for not
recommending G-tube placement for this patient population
and guidelines to help clinicians with the decision-making
process.

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832 Nutrition in Clinical Practice 29(6)

Table 2.  Support for Forgoing G-Tubes in Advanced Dementia and Near End-of-Life Conditions.

Authors
19
Haddad, Thomas
Oyoga, Schein, Gardezi, Wise20
Abuskis, Mor, Segal, et al21
Grant, Rudberg, Brody22
Finucane, Christmas, Travis23
Murphy, Lipman24
Cervo, Bryan, Farber25
Gillick26
Kaw, Sekas27
Meier, Ahronheim, Morris,
Baskin-Lyons, Morrison28
Sampson, Candy, Jones29
Findings/Conclusions
Cumulative study analyses
•• High mortality and morbidity rates
•• Questionable effectiveness except in critical illness and amyotrophic lateral sclerosis
Mortality rate—100 consecutive patients undergoing G-tube placement in community teaching
hospital
•• 41% 30-day mortality
•• 4% related to procedure
Nursing home patients referred for G-tube placement
•• 87% had dementia
•• 39.5% mortality rate (when intention-to-treat analyses were applied to data)
Mortality rates—81,105 patients following G-tube placement
•• 23% - 30 day
•• 63% - 1 year
•• 81.3% - 3 years
Meta-analysis−5266 nursing home residents
•• No improvement in rates of aspiration pneumonia, pressure sores, survival
•• Decline in activities of daily living
•• Tube feedings in patients with advanced dementia should be discouraged based on clinical grounds
Feeding tubes do not prolong survival in patients with dementia
No reduction in oral or gastric aspiration, or pneumonia
Feeding tubes in advanced dementia:
•• Increase mortality, morbidity
•• Often require physical and chemical restraints
•• Increase discomfort
•• Compromise human dignity
Feeding tubes in advanced dementia have no long-term proven benefit
Feeding tubes in advanced dementia reduced short-term survival after in hospital placement
in chronically demented patients with superimposed delirium
Cochrane database systematic review revealed:
•• Insufficient evidence to suggest EN benefits in patients with advanced dementia
•• Lacking data on adverse events associated with EN

EN, enteral nutrition. G-tube refers to any long-term enteral access device.

Patient or Caregiver Decision Maker
Concerns
Addressing the need for shared caregiver-patient experiences
analogous to the strong bonds of food may be key in avoiding
unnecessary G-tube placement. Nurturing a patient at the end
of life may include providing both physical comfort measures
and other activities to allow for mental engagement, such as
listening to music, reading, and looking at photographs.
Physical comfort measures such as frequent mouth care, skin
care, lubricant eye drops, and pain and antiemetic medications
are easy to deliver and could involve family members or sig-
nificant others as caregivers.41
The emotional and symbolic meaning of food is rarely exam-
ined in the healthcare literature. In one qualitative study, older
adults considered appropriate for palliative care or who were suf-
fering from advanced progressive or terminal illnesses identified
the meaning of food as highly symbolic and temporal in nature,
reflecting two distinct schemas of “eating to live” and “living to
eat.”42 These schemas reflected the socially constructed memories
of food through relationships, dietary restriction, sharing and car-
ing, and the importance of food is formed by the patient’s socio-
economic background and relationships. Speech-language
pathologists and occupational therapists provide assistance in an
effort to enhance oral feedings through patient-centered
approaches with careful hand feedings.
These findings are consistent with Meares’43 work on the
relationship between dying cancer patients and caregivers and
the loss of “dinnertime.” He noted that meanings associated with
food were temporal, and provided relational, cultural, ritual, and
personal significance to subjects.43 Meanings, beliefs, and val-
ues related to food should be acknowledged and incorporated
into the decision-making processes for ANH through a G-tube.
When dealing with end-of-life issues, healthcare profession-
als do not appear to be prepared for a common statement from
families: “My family member is going to starve if they do not
have a feeding tube.” In a 2007 Japanese survey, 70% (n = 354)
of family members expressed a high degree of emotional distress,
including feelings of helplessness and guilt, when a terminally ill
cancer patient became unable to take nourishment orally.44 Many

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Schwartz et al 833

Table 3.  Healthcare Organizations Supporting Similar Views on Decision Making or G-Tube Placement in Patients With Advanced
Dementia or Near End of Life.

Organizations Standards, Statements, Positions, and/or Guidelines

Academy of Nutrition and
Dietetics30,31
American Academy of Hospice and
Palliative Medicine34
American College of Physicians35
American Geriatric Society5
American Medical Association36,37
American Nurses Association
(ANA)38
American Society for Parenteral
and Enteral Nutrition8
European Society of Parenteral and
Enteral Nutrition32
National Association of Social
Workers39
Hospice and Palliative Nurses
Association (HPNA)40
In cases where the evidence strongly suggests that feeding or hydration does not provide
benefit, it is the responsibility of the multidisciplinary healthcare team to explain this to
the individual or authorized surrogate, but it is the individual or authorized surrogate who
decides.
Advanced Dementia−Numerous studies found no evidence that enteral tube feeding
provides any benefit in terms of survival time, mortality risk, quality of life, nutrition
parameters, physical function, or improvement or reduced incidence of pressure ulcers.
Other studies indicate that feeding tube insertion in nursing facility residents was
associated with poor survival and a significant increase in the use of healthcare services
after insertion. Rather than enteral tube feeding, the preferred intervention for providing
nutrition is usually total assistance with oral feedings.
Do not recommend percutaneous feeding tubes in patients with advanced dementia; instead,
offer oral assisted feeding.
Artificial administration of nutrition and fluids is a medical intervention subject to the same
principles of decision making as other treatments. Imminently dying patients may develop
fluid overload as their kidneys stop functioning, with peripheral and pulmonary edema;
continued administration of intravenous fluids exacerbates these symptoms and may
cause substantial distress.
Percutaneous feeding tubes are not recommended for older adults with advanced dementia.
Life-sustaining treatments should provide medical benefits and should respect a patient’s
preferences, as communicated by the patient or a legally recognized surrogate. Treatments
such as mechanical ventilation and artificial nutrition and hydration should be provided
only with appropriate authorization from a patient, a surrogate, or court.
ANA believes that adults with capacity or, in the event of incapacity, their surrogates are in
the best position to weigh the harms and benefits of nutrition and hydration as evaluated
and discussed with them by the healthcare team. The acceptance or refusal of food and
fluids, whether delivered by normal or artificial means must be respected. This belief is
consistent with the ANA’s expressed values and goals relative to respect for autonomy,
relief of suffering, and expert care at the end of life.
Artificial nutrition and hydration may not provide any benefit and may have associated
risks in patients with severe dementia or in a persistent vegetative state.
Guidelines on Enteral Nutrition: Ethical and Legal Aspects of Enteral Nutrition Dealing
with Dementia and the Dying Patient (see Appendix A online)
In the late stages of disease (Alzheimer’s or cerebrovascular dementia), the balance of
evidence is that artificial tube feeding has more risks than benefits and should not be
undertaken. In recent studies of terminal dementia, it was shown that tube feeding does
not prolong life and causes more complications than benefits.
Social workers shall incorporate assessments in developing and implementing intervention
plans that enhance the clients’ abilities and decisions in palliative and end-of-life care.
HPNA is committed to compassionate care of persons at the end-of-life. HPNA believes
that the decision to initiate, withhold, or withdraw artificial nutrition and hydration
should be made by the patient and family with accurate and nonjudgmental input from the
healthcare team.

G-tube refers to any long-term enteral access device.

perceived a necessity for improvement in professional practice. A
recommended care strategy developed from the study and
addressed 4 major domains: (1) relieving the family members’
sense of helplessness and guilt; (2) providing up-to-date informa-
tion about hydration and nutrition at the end of life; (3) under-
standing family members’ concerns and providing emotional
support; and (4) relieving the patient’s symptoms.44
The decision to place a feeding tube in a patient with advanced
dementia is one of the sentinel decisions that family members and
healthcare professionals confront.45 A recent review studied
patients admitted from 2000 to 2007 and represented 2797 acute
care hospitals with 280,869 admissions among 163,022 long-term
care facility residents with advanced cognitive impairment.45
Certain factors were associated with increased rates of feeding
tube insertion, even after adjusting for patient-level characteris-
tics. These factors included for-profit ownership, larger hospital
size, and greater intensive care use. Inserting a feeding tube in a
patient with advanced cognitive impairment demonstrated a gap

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834 Nutrition in Clinical Practice 29(6)
Table 4.  Risks, Burdens, and Benefits Comparison for G-Tube Placement in Patients With Advanced Dementia or Near End of Life. 8,14,16-18,31,46
Risks and Burdens
Aspiration
Cellulitus, stomal inflammation, excoriation at tube site
Deprived pleasure of eating
Diarrhea
Fluid overload
Gastrointestinal and venous distention
Increased use of pharmacological sedation
Increased use of restraints
Nausea and vomiting
Negative impact on quality of life through decreased social
interaction at mealtime or decreased delivery of attention
required during assisted oral feeding
Not associated with improved survival based on feeding tube
insertion timing, relative to onset of eating problems
Peritonitis
Tube occlusion
G-tube refers to any long-term enteral access device.
between the existing practice and lack of patient benefit in the
studied population.45 This study called for multifactorial interven-
tions to ensure that the insertion of feeding tubes during acute hos-
pitalization was consistent with patient preferences after thorough
discussion of the risks, burdens, and benefits. Most importantly,
nutrition support experts must clarify with the decision makers
what the underlying illness and prognosis is to help with their
decision process. By indicating if the treatment being provided is
curative, rehabilitative, or palliative, those involved in the deci-
sion-making process can determine if the treatment is right for
them. Only then can a decision about long-term enteral access
device placement be made.
Risks, Burdens, and Benefits of G-Tube
Placement
In order to prevent inappropriate placement of long-term
enteral access devices, the risks, burdens, and benefits
should be addressed prior to their placement in patients with
advanced dementia or at the end of their life. Patients with a
terminal disease, such as cancer or respiratory failure, or
those unwilling to continue medical treatment for similar
conditions due to quality of life factors would be considered
near end of life. The particular aspects of these risks, bur-
dens, and benefits of feeding for G-tube placement in this
patient group are identified in Table 4. It is also important to
acknowledge the focus of patient-centered care; as each per-
son is a unique individual, they may perceive the risks, bur-
dens, and benefits differently. When G-tube placement is
being considered, it is important to consider the variance in
perception in the obligatory discussion with the healthcare
team, family, or significant others.
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Benefits
Artificial nutrition and hydration may help to prevent more serious
debilitating conditions, when used at the early signs of malnutrition
Decreased distress in patients who experience coughing and choking
with oral intake
Preservation of ability to perform simple instrumental daily life
activities
Relief of dehydration
Weight maintenance
 
 
 
 
 
 
Decision-Making Processes for Artificial
Nutrition
Respect for autonomy is essential, defined as the individual’s
right to self-determination as expressed in healthcare decision
making; this may not be possible when the patient has a
decreased mental capacity. Unfortunately, if the individual has
not expressed their wishes prior to their decline in mental
capacity either verbally to a surrogate decision maker or in an
advance directive, someone else will be required to make the
healthcare decisions for them.
A systematic review was conducted to examine how treat-
ment decisions for ANH were made when patients exhibited
decreased mental capacity.47 From 1990 to 2011, 66 studies
were identified, comprising data from 40 countries and 34,649
patients, caregivers, and clinicians.47 Of the papers analyzed, 49
involved individuals with dementia, 30 involved people with
acquired brain injuries, and only 4 examined individuals with
intellectual disabilities. Six themes emerged: (1) clinical indica-
tions were similar across countries but were insufficient alone
for determining outcomes; (2) quality of life was the main fac-
tor in deciding treatment, but its meaning varied; (3) prolonging
life was the second most-cited factor; (4) patient’s wishes were
influential but not determinative; (5) families had some influ-
ence but were infrequently involved in final recommendations;
and (6) clinicians often felt conflicted about their roles. Based
on the results of the literature review,47 implications for clinical
practice were identified and are listed in Appendix B of the
online data supplement that accompanies this paper.
Decision making regarding ANH can also involve a time-
limited trial. For example, a hospitalized patient with advanced
dementia is admitted with aspiration pneumonia and is on
Schwartz et al 835
mechanical ventilation. The patient’s family or significant
other is asked to make a decision about placement of a G-tube.
Some families may need time to mentally process the medical
information about the risk, burdens, and benefits of artificial
nutrition. The clinician could then suggest a time-limited trial
of 1 week or other realistic jointly agreed-upon time period for
the placement of a nasogastric tube feeding to determine if the
patient is able to be extubated and resume an oral diet with
modified food and fluid consistency as needed.
Acute Care Hospital and Long-Term Care
Facility Roles in Feeding Tube Placements
in Patients With Dementia
The 2000 Minimum Data Set (MDS), which contains data on
long-term care facility residents living in all Medicare-certified
or Medicaid-certified facilities in the United States, was exam-
ined for this study.48 The study population was further parti-
tioned into a subset having a feeding tube inserted within a
year of their first MDS assessment (N = 5209). Two-thirds of
all feeding tubes (68.1%) were inserted during an acute care
hospitalization. The most common primary diagnoses associ-
ated with feeding tube insertion during a hospitalization
included aspiration pneumonia, dehydration, dysphagia, uri-
nary tract infection, malnutrition, and pneumonia,48 although
no evidence exists that feeding tubes reduce the risk of any of
these problems. Outcomes in the year following the procedure
were poor: 64.1% died in the year following the procedure, and
1 in 5 tube-fed residents experienced a tube-related complica-
tion necessitating a hospital transfer. According to this study,48
long-term care facility residents who had a feeding tube
inserted were less likely to have an advance directive limiting
aggressive care than those who did not get tube-fed. In addi-
tion, tube-fed long-term care facility residents had a lower like-
lihood of having a designated healthcare proxy through a
durable power of healthcare attorney.
An important finding of this study48 was that the focal point
of decision making for feeding tubes among long-term care
facility residents with advanced dementia occurred in an acute
care hospitalization. If the decision to insert a feeding tube was
primarily occurring at the hospital rather than in the long-term
care facility, the researchers raised questions about the extent to
which advance directives were being followed, and whether
alternatives such as hand-feeding could be sustained during an
acute care hospitalization.48 Knowing the final location of deci-
sion making for tube insertions is crucial in order to adequately
target and shape interventions to decrease the presumed overuse
of feeding tubes. These results support further observations that
the providers in the hospital setting need to be targeted for inter-
ventions aimed at improving this decision-making process.
Long-term care facilities may require G-tube placement in spe-
cific patients prior to transferring the patient from the acute care
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hospital for a variety of reasons. These reasons may be related to
financial issues, limited staffing to feed patients requiring additional
time and care for hand feeding, reimbursement factors, and other
concerns.49,50 Long-term care facility requirements driving feeding
tube placement in patients with advanced dementia in acute care
hospitals needs to be better addressed to reduce inappropriate
G-tube placement. Education of family members, significant oth-
ers, and healthcare professionals alike is the fundamental first step
toward the sensible use of these feeding tubes.49
Development of a Systematic Process to
Prevent Ethical Dilemmas With G-Tube
Placement in Patients With Dementia
A collaborative algorithm for decision making, such as the one
illustrated in Figure 1, along with a checklist (Figure 2) for use
prior to ordering G-tube or other long-term enteral access
device placement in patients with dementia or near end of life
is useful for clinicians. This special report does not intend to
focus on the long-term enteral access device selection related
to optimum location (gastric vs small bowel) or the type of
insertion options (endoscopic, laparoscopic, fluoroscopic, and
open techniques/surgical),51 but rather intends to demonstrate
that these feeding tubes are not recommended in patients with
advanced dementia or near end of life.
Clinicians frequently care for patients for whom long-term
enteral tube feeding is considered. The substantial increase in the
use of endoscopically placed tubes for long-term feeding reflects
the aging population, advances in medicine and technology, and
inadequate advance care planning. Confusion regarding medical
and ethical guidelines for long-term tube feeding often exists
among clinicians, patients, and surrogate decision makers.52
There is a need for improved education for physicians, patients,
family members, significant others, caregivers, and surrogate
decision makers about the use of long-term enteral access devices
and the ethical implications in specific patient populations.
Integrating concepts of patient-centered care, shared deci-
sion making, health literacy, and the teach-back method of edu-
cation enhances ethical dilemma prevention53 (Table 5). The
concepts to be stressed during this discussion should include
respect for autonomy (an individual’s right to self-determina-
tion as expressed in healthcare decision making, either verbally
or in an advance directive), surrogate decision making, cultural
and religious diversity, enteral nutrition through a tube as a
medical therapy, and the importance of advance care planning.
The process should incorporate current literature; engage
the patient, family, significant others, caregivers, and/or sur-
rogate decision makers; and utilize advance directives to pro-
vide healthcare by clinicians, based on the patient’s wishes.
Physician Orders for Life-Sustaining Treatment (POLST) are
forms that may be used in hospitals and long-term care facili-
ties that also address a patient’s wishes.
836 Nutrition in Clinical Practice 29(6)

Patient Admitted With Dementia,

Declining PO Intake and Possible Aspiration
Physician or Designee
Coordinates Collegial Patient-Centered Care, Shared Decision-Making Process
Reviews Advance Directive, Identifies Surrogate Decision Maker
Communicates and Collaborates with Healthcare Team and Surrogate Decision Maker
Documents in Electronic Health Record along with Healthcare Team Members

Registered Nurse Registered Registered Speech-Language

(RN) Dietitian (RD) Pharmacist (RPh) Pathologist (SLP)
Coordinates MD orders Initiates Nutrition Care Coordinates medication Bedside swallow
with bedside care Process (NCP) needs with MD. evaluation.
Interacts with Interacts with Interacts with Interacts with
healthcare team and healthcare team and healthcare team and healthcare team and
surrogate decision surrogate decision surrogate decision surrogate decision
maker maker maker maker

Social Worker Optimizes PO intake Recommends food/ Video swallow

Assists with obtaining
advance directive, social
needs, emotional
support with emphasis
on culture, values, and
faith diversity
Palliative Care Consult for
Quality of life goal discussion
with surrogate decision maker
Spiritual Care Supports
surrogate decision maker and
religious aspects of care
fluid consistency study
with small frequent
meals, nutrient dense,
Pass–continue Fail–address
comfort foods, and current diet feeding decision
feeding assistance options
Determines best route of
medication administration
RN, RD, RPh, SLP completes Case
checklist Prior to G-tube placement
Manager
MD discusses with surrogate decision maker Assists with
feeding options and explains goals patient
Family Care Conference placement
options

RN coordinates RD continues NCP, RPh continues to SLP provides feeding

MD orders with recommends feeding address medication options to surrogate
bedside care components (if G-tube administration routes decision maker if
Interacts with all placed) or oral feedings based on patient decision made not to
healthcare providers based on patient wishes for G-tube or place G-tube,based on
and surrogate wishes and/or best oral feedings patient wishes and/or
decision maker interest of patient best interest of patient

Figure 1.  Collaborative algorithm process prior to gastrostomy tube placement in patients with dementia. G-tube, gastrostomy tube;
PO, per os. G-tube refers to any long-term enteral access device.

Limiting Factors for Practice Change
Appendix C (online) lists some of the limiting factors for practice
change that lead to inappropriate G-tube placement in patients
with dementia or near end of life. Although not all of these factors
may be present at each healthcare facility, the list provides an
opportunity to establish an interdisciplinary and systematic pro-
cess to facilitate decision making that incorporates the patient,
family, significant others, caregivers, and/or surrogate decision
makers’ engagement. It also promotes the use of advance direc-
tives to provide healthcare based on the patient’s wishes and best
interest. The items listed in Appendix C predominately deal with
lack of awareness, knowledge deficit, ineffective communica-
tion, misconceptions, and conflicting role of healthcare profes-
sionals. They also include the lack of advance directives that
define the plan of treatment for terminal illness, as well as the
concern by healthcare providers over malpractice issues. It also
touches on the lack of awareness by the patient’s family or sig-
nificant other, and/or surrogate decision maker over the potential
use of restraints if the patient is pulling at their feeding tube.
Education is a key element required to address the factors
identified for all stakeholders—from the patient, family, sig-
nificant others, caregivers, and/or surrogate decision makers to
the healthcare providers and facility administrators. Care can

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Schwartz et al 837

Clinical Presumed oral intake will provide insufficient nutrition and/or is unsafe due to
indication possible aspiration for period greater than 4 weeks on nasogastric tube feeding?
Yes No
Determined the correct location of the long-term enteral access device based on the
gastrointestinal tract function? Yes No
Swallow Was a video swallow study completed? Yes No
evaluation If yes, when? Was this abnormal? Specify.
Consistent with Is use of tube consistent with patient’s preferences as supported by patient’s quality of
patient’s wishes life goals? Yes No
Preferences How have patient’s preferences, goals, and values been obtained?
obtained for tube (Check all that apply.)
placement Discussed directly with patient
Discussed with patient’s surrogate (for patient lacking decision-making
capacity)
Documented in patient’s advance directive and/or POLST form
Other (specify):
Surrogate Committee formed to make decision on patient’s behalf? Yes No
Preferences Are patient’s preferences, goals, and values formally documented in medical record or
documented Surrogate Committee? Yes No If yes, date:
Medical Is patient’s medical condition expected to remain stable to discharge?
condition stable Yes No
Expected Is patient expected to survive for at least 30 days post tube placement?
survival time Yes No
Primary driving Patient preference Family preference Physician
force for tube Skilled nursing facility requirement; facility name
Other
Are any following conditions present? (This list is not comprehensive. Check if
Potential condition is present or write in any condition that would qualify as “other”.)
contraindications Serious coagulation disorder
Status post cardiac arrest with poor neurological function after 48-72 hours
Extensive tumor infiltration of stomach
End stage dementia (bed-bound, incontinent, nonverbal, dysphagia with
history of aspiration)
Multiorgan failure greater than 3 organs nonreversible
Stage 4 cancer with life expectancy of less than 6 months
Significant intracranial bleed with expected permanent ventilator dependence
Complete obstruction of bowel
Marked peritoneal carcinomatosis
Severe ascites
Peritonitis
Severe psychosis
Other ____________________________________________________________
Clearly limited life expectancy, specify:
Recommendation Based on above answers, is patient appropriate for tube? Yes No If No,
recommend consults for discussion/decision making with patient, family, caregiver,
surrogate decision maker for feeding option needs by: Dietitian
Speech-Language Pathologist Pharmacist Palliative Care Ethics
POLST, physician’s orders for life-sustaining treatment. *Includes gastrostomy, gastrojejunal, jejunal tube
with placement options: endoscopic, laparoscopic, or fluoroscopic;percutaneous endoscopic gastrostomy
tubemost commonlong-term enteral accessdevice.

Figure 2.  Checklist prior to gastrostomy tube or other long-term enteral access device placement.

be improved by requiring the knowledge of advance directives
in the same way allergy listings are required once a patient is
admitted for care. Such requirements create systems within
healthcare that better reframe patient-provider relationships
around the question, “What matters most to you?”59 For
patients who are not able to provide this information, surrogate
decision makers will need to indicate, “What would matter
most to the patient if they could speak for themselves?”59 This
patient-centered approach will prevent unnecessary medical
therapies, including tube feedings that do not meet the patient’s
quality of life goals.
Preparing for the Conversation With
Patient, Family, Significant Other,
Caregiver, and/or Surrogate Decision
Maker
The decision process dealing with the placement of G-tubes in
patients with dementia or near end of life can benefit from con-
cepts being developed by the Institute for Healthcare
Improvement (IHI).59 The IHI, an independent not-for-profit
organization, is a leading innovator in health and healthcare
improvement worldwide. According to the IHI, many healthcare

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838 Nutrition in Clinical Practice 29(6)

Table 5.  Patient-Centered Care Concepts.

Concept
54
Health literacy
Patient-centered care31,55,56
Preventive ethics57
Shared decision making56
Teach-back method58
Definition
•• Degree to which individuals obtain, process, and understand basic health information to make
informed health decisions.
•• Major problem as to patient’s understanding of what healthcare provider says to them.
•• Defined by Institute of Medicine Care that is respectful of and responsive to individual patient
preferences, needs, and values and ensures that patient values guide all clinical decisions.
•• Clinicians and healthcare system to shift focus away from diseases and back to patient and family.
•• Active engagement of patients when fateful healthcare decisions must be made.
•• Focuses on improving health literacy.
•• Activities performed by an individual or group on behalf of a healthcare organization to identify,
prioritize, and address systemic ethics issues.
•• Proposes that ethical conflict is largely preventable and can be avoided with proactive interventions
aimed at the organization, unit, and individual levels.
•• Goal to use a proactive approach, to identify common triggers of ethical conflict, and to address these
triggers before they contribute to conflict.
•• Represents a dramatic shift from the traditional ethics approach, which uses a case-by-case approach.
•• Patients should be educated about the essential role they play in decision making and be given
effective tools to help them understand their options and the consequences of their decisions.
•• Patients should receive the emotional support they need to express their values and preferences and be
able to ask questions without censure from their clinicians.
•• Clinicians need to relinquish their authoritative role and train to become more effective coaches or partners.
•• Shared decision making is the pinnacle of patient-centered care.
•• Ensures that individuals understand what they have been taught.
•• Asking patient to explain or demonstrate what they have been taught.
•• If patient does not explain correctly, individual retaught using a different method and then asked again
to explain or demonstrate what they have been taught.

organizations have no processes in place to prompt discussions
with patients, families, caregivers, and/or surrogate decision
makers about healthcare directives or end of life wishes.59 If this
has not already been done, the optimal time to record, access,
and follow these instructions is at the time the patient is admit-
ted, rather than later during the hospitalization. Ideally, patients
and their families discuss and refine advance directives gradu-
ally over time, before an illness or hospitalization, working with
a familiar healthcare provider whom the patient knows and
trusts and who understands the patient’s unique values, instead
of working with unfamiliar providers in a crisis situation.
IHI and a group of end-of-life experts and concerned health-
care organizations have launched the “Conversation Ready”
initiative.60 This group is committed to developing and enact-
ing processes to create systems that reframe patient-provider
relationships around the question, “What matters most to
you?” IHI is organizing a broader “Conversation Ready Health
Care Community” for organizations committed to working to
develop reliable care processes based on the following core
principles:
1. Engage with our patients and families to understand
what matters most to them at the end of life.
2. Steward this information as reliably as we do allergy
information.
3. Respect patient’s wishes for care at the end of life by
partnering to develop shared goals of care.
4. Exemplify this work in our own lives so that we under-
stand the benefits and challenges.
5. Connect in a manner that is culturally and individually
respectful of each patient.
A cohesive team approach can be achieved by incorporating
these concepts: the physician should be in charge of overall
management of the patient; the bedside registered nurse should
interact continuously with the patient and the patient’s family
or significant other; the registered dietitian should apply the
nutrition care process; the pharmacist should consult on medi-
cation administration alternatives for patients on tube feedings
or with altered swallowing ability; and the speech pathologist
and occupational therapists should present oral feeding alter-
natives. All of these clinicians in addition to the bedside nurse
would interact with the patient, patient’s family, or significant
other to provide information and education. A stronger, more
interactive, and more collaborative position between all of
these clinicians cannot be overemphasized. To enhance facili-
tation of what is most appropriate for the patient, there must be
cohesion between these roles. With the constant interaction
between these disciplines, from working together at the bed-
side, to meeting with the physician and others, collaboration
regarding patient needs, desires, and the appropriateness of
feeding can be collectively determined. Early involvement
with a palliative care team would also be beneficial in recog-
nizing the patient’s expected decline and need for long-term

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Schwartz et al 839
support given their impediment in decision making concerning
their medical therapy.61
The decision-making tools for patients with dementia
included in this special report will provide direction and may
be placed in every patient’s chart as the guideline for continued
evaluation of patients with declining oral intake. This informa-
tion may be made readily available for patients, family, signifi-
cant others, caregivers, and/or surrogate decision makers who
are dealing with decisions about G-tube placements for indi-
viduals near end of life. Interdisciplinary education, collabora-
tion, and integration with family, significant others, caregivers,
and/or surrogate decision makers are vital to the proper man-
agement of these patients and cannot be overemphasized.
Conclusion
The decision not to perform G-tube placement in a patient with
advanced dementia or near end of life is acceptable and sup-
ported by current scientific evidence. Advanced dementia should
be seen by the healthcare team as a terminal illness and profes-
sionals can communicate this information to the patient’s family
or significant others. A thorough discussion should take place
with the patient, family, significant others, caregivers, and/or
surrogate decision makers, touching on the risks, burdens, and
benefits, as well as the most updated evidence-based findings.
The final informed decision should be reached by all members
of the healthcare team using a patient-centered approach.
The autonomy of the patient or surrogate decision maker
should be respected and considered above all other ethical
principles. Emphasis should be placed on functional status and
quality of life. Cultural, religious, social, and emotional sensi-
tivity is essential in the process.
Healthcare institutions, both hospitals and long-term care
facilities, should develop a systematic process to facilitate deci-
sion making that promotes advance directives to provide health-
care based on the patient’s wishes and best interest. The role of
education for all stakeholders in the process of patient-centered
care is essential. Awareness and application of knowledge will
be required to resolve the practice gap between evidence-based
medicine and G-tube use in patients with advanced dementia or
near end of life, including risks, burdens, benefits, and expected
short-term and long-term outcomes.
Although this special report on G-tube placement is
intended for use in a specific patient population, concepts pre-
sented in the paper, along with the tables and figures, may be
applied to other patients if used in conjunction with scientific
information about that defined patient population. Ideally, this
special report will serve as an educational tool to engage clini-
cians and administrators in practice changes to improve care to
patients with dementia and near end of life conditions.
Acknowledgments
This article was developed by the International Clinical Ethics
Section (ICES) of the American Society for Parenteral and Enteral
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Nutrition (A.S.P.E.N.). The authors wish to acknowledge the
A.S.P.E.N. Board of Directors for providing final approval (Daniel
Teitelbaum, MD; Ainsley Malone, MS, RD, CNSC; Gordon Sacks,
PharmD, BCNSP, FCCP; Charlene W. Compher, PhD, RD, CNSC,
LDN, FADA, FASPEN; Lawrence A. Robinson, BS, MS, PharmD;
Phil Ayers, PharmD, BCNSP, FASHP; Albert Barrocas, MD,
FACS, FASPEN; Bryan Collier, DO, CNSC, FACS; M. Molly
McMahon, MD; Christina J. Valentine, MD, MS, RD; Jennifer A.
Wooley, MS, RD, CNSC; and Charles W. Van Way III, MD,
FASPEN) as well as A.S.P.E.N. Staff: Jennifer Kuhn, MPS; Donna
Klinger; and Kimberly Rosenfield. The authors acknowledge the
following individuals for their efforts in the development of this
special report: Colleen Christmas, MD, FACP; Trisha Fuhrman,
MS, RDN, LD, FAND; and Laura Matarese, PhD, RD, LDN,
CNSC, FADA, FASPEN.
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