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or patients with severe demen-tia, the decision to use or with-

hold artificial nutrition and hydrationcan be difficult. Frequently, the burdenfalls on the patient’s family or other sur-rogate decision makers. As the popula-tion ages and the prevalence of demen-tia increases, this problem will arise

with still greater frequency. By the year2030, approximately 20% of the U.S.population will be over age 65.1

Patients with advanced dementiacommonly develop problems with eat-ing. Eating is typically the last activityof daily living (ADL) to become im-paired, and loss of this function is as-

sociated with the final phase of the ill-ness. The difficulty in eating may arisefrom indifference or resistance to food,failure to manage the food bolus prop-erly once it has entered the mouth, oraspiration when swallowing.

Percutaneous endoscopic gastrostomy(PEG) tubes were first introduced in1980 to provide enteral nutrition in chil-dren and young adults; currently, how-ever, PEG tubes are primarily placed inolder patients with chronic or degener-ative diseases of the nervous system,heart, lungs, or kidneys. PEG tube feed-ing is the preferred device recommendedby the American GastroenterologicalAssociation (AGA) for providing long-term enteral nutrition to a patient nolonger able to receive an adequateamount of food orally.2 Significantly,PEG tubes are being placed in patientswith increasing frequency: in 1989,15,000 PEG tubes were placed; in 2000,more than 216,000 tubes were placed.2

Approximately 30% of all PEG tubesare placed in patients with dementia, andas many as 10% of institutionalized olderpatients are being tube fed (table 1).2,3

One reason the rate of PEG tubeplacement has increased so dramati-cally is that tube placement is a rela-tively “easy” procedure. PEG tubeplacement can be performed by a radi-ologist, gastroenterologist, or surgeon.It requires only local anesthesia, takesbetween 10 and 30 minutes to com-plete, is covered by Medicare, and may

Percutaneous endoscopic gastrostomy (PEG) has evolved into acommon low-risk procedure in current medical practice. Clinicalevidence supporting the use of tube feedings in patients with advanceddementia is clearly lacking, yet PEG procedures continue to beperformed in a large number of these cases. In fact, multiple studieshave shown that feeding tubes seldom are effective in improvingnutrition, maintaining skin integrity by increased protein intake,preventing aspiration pneumonia, minimizing suffering, improvingfunctional status, or extending life. The decision-making process iscomplicated, however, and involves the clinician considering suchissues as advance directives, ethical considerations, legal/financialconcerns, emotional factors, cultural background, religious beliefs, andthe need for a family meeting incorporating all of these principles.

Cervo FA, Bryan L, Farber S. Feeding tubes in patients with advanced dementia: The deci-sion-making process. Geriatrics 2006; 61(May):30-35.

Key words: feeding tube • gastrostomy • dementia • decision makingnutrition • quality of life • ethical considerations

F

Dr. Cervo is associate professor of clinical medicine, State University of New Yorkat Stony Brook and Medical Director, Long Island State Veterans Home.

Dr. Bryan is clinical assistant instructor of medicine, State University of New Yorkat Stony Brook.

Dr. Farber is clinical assistant instructor of medicine, State University of New Yorkat Stony Brook.

Disclosures: The authors report no relevant financial relationships.

Frank A. Cervo, MD, CMD • Leslie Bryan, MD • Sharon Farber, MD, MPH

To PEG or not to PEGA review of evidence for placing feeding tubes inadvanced dementia and the decision-making process

30 Geriatrics June 2006 Volume 61, Number 6 www.ger i .com

ETHICAL CONSIDERATIONS©

See guest editorial, pg. 12-13


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be performed at bedside.2 Complica-tions related to placement are gener-ally minor, although the long-term rateof complications has been reported torange from 32% to 70%.4 Furthermore,the AGA guidelines allow for PEGtubes when:

1) the patient cannot or will not eat2) the gut is functional3) the patient can tolerate the place-

ment of the device.2

These broad guidelines would allowfor the placement of a PEG tube in theoverwhelming majority of clinical sce-narios. Therefore, it is imperative thatclinicians be familiar with the data sur-rounding PEG tube placement, espe-cially in individuals with severe demen-tia, so that families may be appropriatelyguided in their decision-making.

Physicians and family members of-ten perceive feeding tube placement inseverely demented patients as benefi-cial. There is no evidence to supportthis belief: most of the medical evi-dence is based on observational stud-ies, retrospective studies, or data ex-trapolated from mixed populations.3

There are no randomized controlledstudies comparing PEG tube feedingto hand feeding. Nevertheless, multi-ple studies have shown that feedingtubes seldom are effective in improv-ing nutrition, maintaining skin integrityby increased protein intake, prevent-ing aspiration pneumonia, minimizingsuffering, improving functional status,or extending life (table 2).

The evidenceNUTRITION: Patients with severe demen-tia can develop loss of appetite anddysphagia resulting in abnormal mark-ers of nutritional status, which promptfeeding tube placement. Feeding tubesare often placed in an effort to preventmalnutrition, however, studies do notsupport this practice.3 In a study byHenderson et al5 of 40 chronicallytube-fed, long-term care patients, an-thropomorphic, biochemical, clinical,and dietary data were measured. Con-

trary to expected benefit, increasingweight loss and pressure ulcer devel-opment were associated with longer-term tube feeding.5 In other studies,nutritional markers such as hemoglo-

bin, hematocrit, albumin, and choles-terol levels did not show a significantimprovement after placement of afeeding tube.3

SKIN INTEGRITY: Published reviews of

Percutaneous endoscopic gastrostomy use has risen dramatically since 1989. PEGtube placement is relatively easy: it requires only local anesthesia, takes 10-30minutes, is covered by Medicare, and can be performed at bedside. Determining whois an appropriate candidate is not so easy. Illustration for Geriatrics by Alexandra Baker.

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the medical literature6,7 demonstrate thatfeeding tube placement is ineffectivein the prevention or treatment of pres-sure ulcers. In fact, a positive correla-tion between pressure ulcers and long-term tube feeding has been demon-strated.5 Bedfast, incontinent dementiapatients who are tube fed are more likelyto be restrained, putting them at greaterrisk for pressure ulcer formation.8

ASPIRATION PNEUMONIA: Prevention of as-piration pneumonia is often cited as oneof the reasons patients with eating dif-ficulties have feeding tubes placed. As-piration occurs in up to 50% of patientswith feeding tubes.9 There is some evi-dence that PEG tube placement may re-duce lower esophageal sphincter pres-sure, increasing the risk of gastroe-sophageal reflux, although there are nostudies of this in older patients.8 Onestudy demonstrated that a history of pre-vious aspiration is a poor prognostic fac-

tor for feeding tube insertion.10

The mechanisms of swallowing anddysphagia are complex, and the diag-nosis of aspiration pneumonia is im-precise.8 Therefore, the causal relation-ship between the presence and the ab-sence of a feeding tube and aspirationpneumonia is often unclear. Aspirationof oral secretions is not prevented bythe insertion of a feeding tube.

QUALITY OF LIFE: It is nearly impossibleto obtain data on the subjective experi-ence of patients with severe dementiawho stop eating. Data about thirst andhunger can only be extrapolated fromdying patients with other terminal ill-nesses. In a study by McCann and col-leagues,11 symptoms of hunger, thirst,and dry mouth were ameliorated withsmall amounts of food, fluids, applica-tion of ice chips, and lubrication of thelips. Moreover, many elderly patientsdo not feel distress from dehydration

because they have an impaired thirstmechanism.4 Dehydration results in de-creased production of bodily fluids,which reduces the need for suctioningand toileting. Patients often have lessdiscomfort when artificial nutrition andhydration are not undertaken.

When tube feeding is used as a per-manent replacement to oral feeding,patients are deprived of the pleasurethat comes from eating and the socialinteractions that occur with mealtimes.Conversely, hand feeding is an act ofnurturing that involves human beingsin close contact and touching.

It is possible that a severely de-mented patient’s quality of life willworsen with tube feeding if restraintsare needed. A patient with severe de-mentia cannot understand why a tubeis protruding from the abdomen, whichcan lead to the patient trying to pull thefeeding tube out.4 One study found thatseverely demented patients with feed-ing tubes were much more likely tohave their hands in “mittens” and of-ten required additional restraints.12 Theexperience of being restrained is dis-tressing and can make the patient be-come still more agitated. This conse-quence, in turn, may result in the useof pharmacologic sedation.4

Based on the author’s personal ob-servations and understanding of avail-able data, feeding tubes do not improvequality of life and may increase patientsuffering and discomfort.

FUNCTIONAL STATUS AND SURVIVAL: Tubefeedings are often intended to improvestrength, function, or self-care; dataabout the impact of feeding tubes onfunctional status are limited, however.A retrospective review of nursing homeresidents with PEG tubes found no im-provement in bowel or bladder func-tion, mental status, speech, ADLs, orambulation during the 18 months af-ter PEG tube placement.13

Mortality among tube-fed patients issubstantial. In one study of 7,369 pa-tients who underwent PEG tube place-ment, 23.5% of patients died during the

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Table 1 Feeding tube: The facts© Percutaneous endoscopic gastrostomy (PEG) introduced in 1980

© More than 216,000 feeding tubes were placed nationally in the year 2000

© Dementia patients account for 30% of all feeding tube placements

© Broad guidelines allow for “easy” placement

© Long-term complication rate ranges from 32% to 70%

Source: Created for Geriatrics by FA Cervo, MD, L Bryan, MD, and S Farber, MD.

Table 2 Feeding tube myths

It’s believed that feeding tubes: Evidence© Prevent malnutrition © No improvement of nutritional

markers; may increase weight loss

© Maintain skin integrity © Increased risk for pressure ulcer formation

© Prevent aspiration pneumonia © May reduce lower esophageal sphincter pressure; no prevention oforal secretion aspiration

© Improve quality of life © May increase suffering and discomfort

© Increase functional status © Terminal diseases not reversed by and survival feeding tube placement


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hospital admission and median survivalwas only 7.5 months.14 Another largestudy of 81,105 patients who underwentPEG or surgical gastrostomy tube place-ment found that 63% had died by 1 yearafter placement and 81.3% were deadby 3 years.15 Severe dementia is a termi-nal illness that is not reversed by feed-ing tube placement.

Decision-making The decision-making process regard-ing feeding tube placement is compli-cated because it is often influenced bymultiple non-clinical, non-evidencebased factors. The demonstrated lackof benefit for placement of feedingtubes in patients with advanced demen-tia only further complicates the physi-cian’s role in the process. To help guidethe primary care practitioner in thisprocess, the following is an overviewof the different issues involved. Theseinclude advance directives, ethical con-siderations, legal/financial concerns,emotional factors, cultural background,religious beliefs, and the need for afamily meeting incorporating all ofthese principles (table 3).

ADVANCE DIRECTIVES: Advance direc-tives, such as healthcare proxies andliving wills, are critical in the decision-making process. Healthcare practition-ers should make every attempt to ob-tain these directives from their patientsduring office/clinic visits. The oppor-tunity may be lost if the patient devel-ops severe illness or loses decision-making capacity. Asking patients tomake sure you have a copy for yourchart is one option. Providing waitingroom information on how/where to getone is another option.

Healthcare proxies should reflectthe patient’s specific wishes regardingartificial nutrition and hydration.Whereas living wills provide evidenceof a patient’s wishes, designation of ahealthcare proxy may be preferable be-cause the practitioner can explain op-tions to a surrogate rather than inter-preting a written document.

Despite their importance, advancedirectives are not a panacea becausethey are often overruled by surrogates,thus compromising the ethical princi-ple of autonomy.16,17

In the absence of an advance direc-tive, substituted judgment dictates thatdecisions are made based on what a sur-rogate believes the patient would chooseif he or she had capacity.17 Surrogatesare often uncertain or unaware of the pa-tient’s wishes regarding feeding tubes.In this case, decisions may need to bebased on the patient’s best interests.

Advance directive statutes and sur-rogate decision-making authority varythroughout the nation, making the de-cision-making process more difficult.Healthcare practitioners need to beknowledgeable of the laws governingadvance directives in the individualstates in which they practice.

ETHICAL CONSIDERATIONS: Healthcarepractitioners have no obligation to of-fer, recommend, or perform an inter-vention that has no benefit. If an inter-vention has a benefit, then it should beoffered and recommended. If a clinicalbenefit is uncertain, then decisionsshould be based on patient/family val-ues and preferences in concert withdiscussion with the physician.18 Tubefeeding, as a form of medical therapy,can legitimately be withheld if the risksof the intervention outweigh the ben-efits.4 Although the use of feeding tubesis not unequivocally futile in all cases,

the overwhelming evidence indicatesthat feeding tubes do not improvehealth outcomes in patients with ad-vanced dementia.4

LEGAL/FINANCIAL CONCERNS: Despite thelack of evidence of poor beneficial out-comes, healthcare practitioners mayfeel legally bound to provide tube feed-ing to a patient with advanced demen-tia who ceases to eat. In the highly reg-ulated nursing home environment,practitioners may fear legal actionbased on the development of malnu-trition or pressure ulcers.

Nursing homes are reimbursed at ahigher rate for tube fed patients; further-more, hand feeding, which is morenursing, labor intensive and time con-suming may not occur in accordancewith clinical trial protocols.3 These non-clinical factors often lead to feedingtube placement.

In New York State, clear and con-vincing evidence is required for with-holding/withdrawing artificial nutri-tion and IV hydration without a health-care proxy. Reasonable knowledge ofthe patient’s wishes is required in caseswhere a proxy has been designated.

EMOTIONAL FACTORS: Decisions concern-ing feeding tube placement in advanceddementia patients are regularly madeby surrogates who are uncertain of theirloved one’s wishes and who feel emo-tionally distressed.16 Decision-makingis often emotionally charged, and sur-rogates may lack a clear understand-

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FEEDING TUBES

Table 3 Decision-making approach to tube feeding in patients with advanced dementia© Obtain advance directives

© Consider ethical principles

© Be aware of legal and financial concerns

© Be sensitive to emotional factors

© Understand cultural background

© Respect religious beliefs

© Conduct a family meeting incorporating the above principles



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ing and acceptance about the true na-ture of the illness.16,17 Although mostpatients die despite tube feeding, a fewindividuals survive for many years.This occasional outcome may fosterunrealistic expectations about the ben-efits of tube feeding.19

Feelings of guilt and desperation arelikely to play substantial roles in thedecision-making process.16 Tube feed-ing may have a great symbolic valueand be perceived as a last means of pro-viding care.19 Surrogates may be un-able to bear the burden of allowing aloved one to die.16 Healthcare practi-tioners must educate decision-makersto understand that a gradual disinterestin food is a normal and natural part ofthe dying process. This may help to al-leviate much anxiety and restore a cru-cial sense of control.20

CULTURAL BACKGROUND: The cultural back-ground of patients and their families maybe a pivotal factor in decisions concern-ing tube feeding. The predominant West-ern biomedical model is based on amechanistic model of the human body,separation of mind and body, and dis-continuity of spirit and soul.

© Native American traditions arebased on mind-body-spirit integration.Life and death may be viewed in a cir-cular, rather than a linear, pattern.21

© Many African-Americans are skep-tical and distrustful of mainstream med-icine, especially when making decisionsabout end-of-life care. This may be dueto experiences of segregation and mem-ories of the Tuskegee experiment.21

© For many Asian-American elders,end-of-life decisions may be charac-terized by priority of family versus in-dividual decision-making. Non-disclo-sure of terminal illness to protect theelder and the practice of not disturb-ing the body of a dying or dead personmay also be prevalent.21

Cultural decision-making conflictsconcerning tube feeding require thathealthcare practitioners listen carefullyto the views of patients and surrogates.Input from a source familiar with an

individual’s cultural background mayneed to be enlisted in order to resolvethese differences.

RELIGIOUS BELIEFS: Religious beliefs ofpatients must be factored into the de-cision-making process. Physicians needto be mindful that not all members ofa religious sect prescribe to all its tenets.Here again, advance directives are help-ful if they spell out individual patientbeliefs about such issues. Some Chris-tian patients and families often demandaggressive medical care because theyhope for a miracle, or refuse to give upfaith, or believe that suffering may haveredemptive value, or have a convictionthat every moment of life is a gift fromGod (ie, preserve life at all costs).22 Pa-tients or surrogates may feel that their

preferences override the physician’sjudgment (ie, futility).22 Family mem-bers’ religious beliefs may lead to ag-gressive end-of-life care despite evi-dence to the contrary.

In Judaism, sanctity of life and theinfinite value of human life are para-mount principles. However, the processof dying must be respected when it isoccurring, imminent, and irreversible.23

Islam similarly values sanctity of life,yet respects the inevitability of death.Autonomy is of primary importancein the Christian faith. Jewish and Mus-lim faiths respect autonomy but con-sider it secondary to the patient’s healthand welfare as judged by clinicians.23

Participation by clergy or otherstrained in pastoral care may help resolvereligious conflicts.22 Some have sug-gested open discussion with patients andfamilies of the clinical and theologicalbasis for requests concerning aggressivecare (ie, feeding tubes). Practitionersshould use additional religious doctrinesfrom patients’ own traditions to balancethe reasons behind such requests,24 inthis case, for tube feeding in the advanceddementia patient.

FAMILY MEETING: All of the factors pre-viously described herein play an im-portant role at the time of a familymeeting. A family meeting is essen-tial, for it allows patients and their fam-ilies to shift the goals of care from un-realistic expectations of a cure to theprovision of comfort. At this meetingit is important that the healthcare prac-titioner discuss, in a risk/benefit con-text, the lack of evidence supportingfeeding tube placement in patients withadvanced dementia. The risks and com-plications of feeding tube placementshould also be explained in the contextof the patient’s illness and prognosis.20

Families may feel that their loved oneswill “starve to death” if tube feeding isnot initiated. By understanding the meta-bolic processes that occur when patientsstop eating, this fear can be allayed. Pa-tients with progressive dementia maybe successfully managed by continuedoral feeding, letting the natural courseof their disease define the extent and du-ration of feeding.20

SummaryPEG tube placement has become acommon, low-risk procedure in cur-rent medical practice. The clinical ev-idence supporting the use of tube feed-ings in patients with advanced demen-tia is clearly lacking, yet PEG proce-dures continue to be performed, andtube feedings provided in a large num-ber of cases. We have described anoverview that includes some more im-portant factors inherent to the issue oftube feeding in the advanced dementia

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Decision making isoften emotionallycharged, andsurrogates maynot understandthe true natureof the illness


www.ger i .com June 2006 Volume 61, Number 6 Geriatrics 35

patient. We hope this will guide and assist healthcare prac-titioners in this often difficult, confusing, and time-con-suming decision-making process.

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