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ETHICAL ISSUES IN ALZHEIMERS DISEASE

Assisted Oral Feedingand Tube Feeding

C O M M O N Q U ESTIO N S

s When an individual with Alzheimers reachesthe advanced stages of the disease, is it ethical-ly or medically necessary to insert a feedingtube for artificial nutrition and hydration?

s Can a decision to withhold or withdraw arti-ficial nutrition and hydration be made bysomeone other than the individual withAlzheimers?

s What are the arguments in favor of assistedoral feeding?

BACKGROUN D INFORMATIO N

Persons with advanced Alzheimers disease whosurvive to the point of being unable to swalloweven with assistance, or who have lost all interestin eating and drinking, are in the final phase ofthe process of dying. Their increasing sleep natu-rally limits intake of food or water. They will usu-ally die comfortably in several days or a week.Some dehydration may occur, and dry mucousmembranes can be cared for with artificial salivaand ice chips.

The physiological responses and probable physicalreactions to the cessation of nutrition and hydra-tion have been described in medical literature. Inthe absence of nutrition and hydration, the bodydraws on endorphin, a morphine-like substancein the body that blunts nerve endings. An emerg-ing consensus indicates that this form of naturaldying is comfortable. This effect can be supple-mented with the use of morphine to provideabsolute comfort.

The practice of long-term tube feeding in personswith advanced dementia began only in the mid-1980safter the development of a technique calledpercutaneousendoscopic gastrostomy (PEG).With this procedure a feeding tube passes throughthe skin of the abdomen and directly into thestomach. Before the introduction of PEG tubefeeding, such persons were cared for throughassisted oral feeding. In comparison with assistedoral feeding, however, long-term tube feeding hasno advantages and a number of disadvantages.

A SSOCIATIO N PO SITION S

The Alzheimers Association has addressed theissue of end-of-life nutrition and hydration inseveral documents. The 1994 statement Guide-lines for the Treatment of Patients wi th Advanced

Dementiaincludes the following position:

Severely and irreversibly demented patientsneed only care given to make them comfort-able. If such a patient is unable to receive foodand water by mouth, it is ethically permissibleto choose to withhold nutrition and hydrationartificially administered by vein or gastric tube.Spoon feeding should be continued if neededfor comfort.

In the 1997 publication Ethical Considerations:Issues in Death and Dying, the Associationaffirmed the need for planning by the individ-ual with Alzheimers while still competent andendorsed the use of advance directives, legaldocuments specifying an individuals wishes forfuture care decisions. The Association also assert-ed that in the absence of such directives, a surro-gate (usually a trusted family member) may makedecisions consistent with the patients expressed

Ca re a nd Patients Rights

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wishes or best interests. This statement refers notjust to an absolute right to avoid mechanical ven-tilators, dialysis, and cardiopulmonary resuscita-

tion, but also to tube feeding and antibiotics. Inall these categories, surrogate choice to refuse orwithdraw treatments should be honored.

In 2000, the Ethics Advisory Panel moved to afirm recommendation of assisted oral feedingcoupled with hospice care when needed as thecompassionate alternative to tube feeding. Thisrecommendation emerged primarily from twomajor studies. Muriel R. Gillick, MD, publishedRethinking the Role of Tube Feeding in Patientswith Advanced Dementia in the January 20,2000, issue of theNew England Journal ofMedicine;Thomas E. Finucane, MD, was thelead author of Tube Feeding in Patients withAdvanced Dementia: A Review of the Evidencein the October 13, 1999, issue of theJournal ofthe American Medical Association.

In both articles, the authors point out that PEGtube-feeding is associated with increased diarrheaand related discomfort. PEG tube-feeding alsoresults in greatly increased use of physicalrestraints to prevent patients from pulling thetubes out of their abdomens. Paradoxically, this isoccurring at a time when most long-term carefacilit ies recognize the benefits of minimal or norestraint policies.

Moreover, nutritional status does not usuallyimprove with the use of tube feeding, nor doessuch use prevent or lower the incidence of aspira-

tion pneumonia. There is no evidence to suggestthat tube feeding reduces skin breakdown andthe likelihood of pressure sores. Contrary tomyth, there is no average difference in longevitybetween persons with advanced Alzheimers whoare tube fed and those provided with assistance inoral feeding as needed.

Other studies support the Associations position towithhold or withdraw the use of feeding tubes. Aresearch group led by Dwenda K. Gjerdingen, MD,

published a survey on this topic in the September/October 1999 issue ofArchives of Family Medicine.The researchers found that the use of PEG tube-feeding is contrary to the preferences of an over-whelming number of elderly persons. More than95 percent of cognitively intact respondents,65 years and older, indicated that should theyever have severe dementia, they would not wantcardiopulmonary resuscitation, use of a respirator,or tube feeding. Susan L. Mitchell, MD, and hercolleagues published a related study in the April2000 issue of theJournal of the American GeriatricsSociety.The researchers found that most familysurrogates who consent to tube feeding for aloved one with advanced Alzheimers come toregret the decision.

The Ethics Advisory Panel has also noted that theperson receiving long-term tube feeding is deniedthe gratification of tasting preferred foods. Theperson with advanced dementia has sufferedmany losses that severely diminish the quality oflife, including the capacity to communicate byspeech, to recognize loved ones, to control boweland bladder, and to enjoy continuity with thepast. In such circumstances, small grati ficationsare all that remain. Tube feeding denies the sen-sory benefits of assisted oral feeding, as well asthe emotional and relational benefits of interact-ing with a good caregiver who assists in an emo-tionally affirming manner.

The Association emphasizes that assisted oralfeeding should be available to all persons withadvanced Alzheimers as needed. Neglect in thisarea should not be tolerated, and concertedefforts are called for to educate and support pro-fessional and family caregivers in techniques ofassisted oral feeding.

To receive addit ional A ssociat ion materials on this topic, log onto the Associat ions Web site (http:/ / ww w.alz.org) or call (80 0) 27 2-39 00 .