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  1. 1. ᮣ ETHICAL CONSIDERATIONS To PEG or not to PEG A review of evidence for placing feeding tubes in advanced dementia and the decision-making process Frank A. Cervo, MD, CMD • Leslie Bryan, MD • Sharon Farber, MD, MPH Percutaneous endoscopic gastrostomy (PEG) has evolved into a common low-risk procedure in current medical practice. Clinical evidence supporting the use of tube feedings in patients with advanced dementia is clearly lacking, yet PEG procedures continue to be performed in a large number of these cases. In fact, multiple studies sociated with the final phase of the ill- have shown that feeding tubes seldom are effective in improving ness. The difficulty in eating may arise nutrition, maintaining skin integrity by increased protein intake, from indifference or resistance to food, preventing aspiration pneumonia, minimizing suffering, improving failure to manage the food bolus prop- functional status, or extending life. The decision-making process is erly once it has entered the mouth, or complicated, however, and involves the clinician considering such aspiration when swallowing. issues as advance directives, ethical considerations, legal/financial Percutaneous endoscopic gastrostomy concerns, emotional factors, cultural background, religious beliefs, and (PEG) tubes were first introduced in the need for a family meeting incorporating all of these principles. 1980 to provide enteral nutrition in chil- Cervo FA, Bryan L, Farber S. Feeding tubes in patients with advanced dementia: The deci- sion-making process. Geriatrics 2006; 61(May):30-35. dren and young adults; currently, how- ever, PEG tubes are primarily placed in Key words: feeding tube • gastrostomy • dementia • decision making nutrition • quality of life • ethical considerations older patients with chronic or degener- ative diseases of the nervous system, heart, lungs, or kidneys. PEG tube feed- ing is the preferred device recommended by the American Gastroenterological Association (AGA) for providing long-F or patients with severe demen- tia, the decision to use or with-hold artificial nutrition and hydration with still greater frequency. By the year 2030, approximately 20% of the U.S. population will be over age 65.1 term enteral nutrition to a patient no longer able to receive an adequate amount of food orally.2 Significantly,can be difficult. Frequently, the burden Patients with advanced dementia PEG tubes are being placed in patientsfalls on the patient’s family or other sur- commonly develop problems with eat- with increasing frequency: in 1989,rogate decision makers. As the popula- ing. Eating is typically the last activity 15,000 PEG tubes were placed; in 2000,tion ages and the prevalence of demen- of daily living (ADL) to become im- more than 216,000 tubes were placed.2tia increases, this problem will arise paired, and loss of this function is as- Approximately 30% of all PEG tubes are placed in patients with dementia, and as many as 10% of institutionalized older patients are being tube fed (table 1).2,3 All Rights Reserved. Advanstar Communications Inc. 2006 Dr. Cervo is associate professor of clinical medicine, State University of New York at Stony Brook and Medical Director, Long Island State Veterans Home. One reason the rate of PEG tube placement has increased so dramati- Dr. Bryan is clinical assistant instructor of medicine, State University of New York cally is that tube placement is a rela- at Stony Brook. tively “easy” procedure. PEG tube Dr. Farber is clinical assistant instructor of medicine, State University of New York at Stony Brook. placement can be performed by a radi- Disclosures: The authors report no relevant financial relationships. ologist, gastroenterologist, or surgeon. It requires only local anesthesia, takes See guest editorial, pg. 12-13 between 10 and 30 minutes to com- plete, is covered by Medicare, and may30 Geriatrics June 2006 Volume 61, Number 6
  2. 2. FEEDING TUBESbe 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 eat 2) the gut is functional 3) 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.3There 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 prompt Percutaneous endoscopic gastrostomy use has risen dramatically since 1989. PEG tube placement is relatively easy: it requires only local anesthesia, takes 10-30feeding tube placement. Feeding tubes minutes, is covered by Medicare, and can be performed at bedside. Determining who All Rights Reserved. Advanstar Communications Inc. 2006are often placed in an effort to prevent is an appropriate candidate is not so easy. Illustration for Geriatrics by Alexandra Baker.malnutrition, however, studies do notsupport this practice.3 In a study by trary to expected benefit, increasing bin, hematocrit, albumin, and choles-Henderson et al 5 of 40 chronically weight loss and pressure ulcer devel- terol levels did not show a significanttube-fed, long-term care patients, an- opment were associated with longer- improvement after placement of athropomorphic, biochemical, clinical, term tube feeding.5 In other studies, feeding tube.3and dietary data were measured. Con- nutritional markers such as hemoglo- SKIN INTEGRITY: Published reviews June 2006 Volume 61, Number 6 Geriatrics 31
  3. 3. FEEDING TUBES because they have an impaired thirst Table 1 Feeding tube: The facts mechanism.4 Dehydration results in de- creased production of bodily fluids, ᮣ Percutaneous endoscopic gastrostomy (PEG) introduced in 1980 which reduces the need for suctioning ᮣ More than 216,000 feeding tubes were placed nationally in the year 2000 and toileting. Patients often have less ᮣ Dementia patients account for 30% of all feeding tube placements discomfort when artificial nutrition and ᮣ Broad hydration are not undertaken. guidelines allow for “easy” placement When tube feeding is used as a per- ᮣ Long-term complication rate ranges from 32% to 70% manent replacement to oral feeding, Source: Created for Geriatrics by FA Cervo, MD, L Bryan, MD, and S Farber, MD. patients are deprived of the pleasure that comes from eating and the social interactions that occur with mealtimes. Table 2 Feeding tube myths Conversely, hand feeding is an act of nurturing that involves human beings It’s believed that feeding tubes: Evidence in close contact and touching. ᮣ Prevent malnutrition ᮣ Noimprovement of nutritional It is possible that a severely de- markers; may increase weight loss mented patient’s quality of life will ᮣ Maintain skin integrity ᮣ Increased risk for pressure worsen with tube feeding if restraints ulcer formation are needed. A patient with severe de- ᮣ Prevent aspiration pneumonia ᮣ May reduce lower esophageal mentia cannot understand why a tube sphincter pressure; no prevention of is protruding from the abdomen, which oral secretion aspiration can lead to the patient trying to pull the ᮣ Improve quality of life ᮣ May increase suffering and feeding tube out.4 One study found that discomfort severely demented patients with feed- ing tubes were much more likely to ᮣ Increase functional status ᮣ Terminal diseases not reversed by have their hands in “mittens” and of- and survival feeding tube placement ten required additional restraints.12 The Source: Created for Geriatrics by FA Cervo, MD, L Bryan, MD, and S Farber, MD. experience of being restrained is dis- tressing and can make the patient be-the medical literature6,7 demonstrate that tor for feeding tube insertion.10 come still more agitated. This conse-feeding tube placement is ineffective The mechanisms of swallowing and quence, in turn, may result in the usein the prevention or treatment of pres- dysphagia are complex, and the diag- of pharmacologic sedation.4sure ulcers. In fact, a positive correla- nosis of aspiration pneumonia is im- Based on the author’s personal ob-tion between pressure ulcers and long- precise.8 Therefore, the causal relation- servations and understanding of avail-term tube feeding has been demon- ship between the presence and the ab- able data, feeding tubes do not improvestrated.5 Bedfast, incontinent dementia sence of a feeding tube and aspiration quality of life and may increase patientpatients who are tube fed are more likely pneumonia is often unclear. Aspiration suffering and be restrained, putting them at greater of oral secretions is not prevented by FUNCTIONAL STATUS AND SURVIVAL: Tuberisk for pressure ulcer formation.8 the insertion of a feeding tube. feedings are often intended to improve ASPIRATION PNEUMONIA: Prevention of as- QUALITY OF LIFE: It is nearly impossible strength, function, or self-care; datapiration pneumonia is often cited as one to obtain data on the subjective experi- about the impact of feeding tubes onof the reasons patients with eating dif- ence of patients with severe dementia functional status are limited, however.ficulties have feeding tubes placed. As- who stop eating. Data about thirst and A retrospective review of nursing homepiration occurs in up to 50% of patients hunger can only be extrapolated from residents with PEG tubes found no im- All Rights Reserved. Advanstar Communications Inc. 2006with feeding tubes.9 There is some evi- dying patients with other terminal ill- provement in bowel or bladder func-dence that PEG tube placement may re- nesses. In a study by McCann and col- tion, mental status, speech, ADLs, orduce lower esophageal sphincter pres- leagues,11 symptoms of hunger, thirst, ambulation during the 18 months af-sure, increasing the risk of gastroe- and dry mouth were ameliorated with ter PEG tube placement.13sophageal reflux, although there are no small amounts of food, fluids, applica- Mortality among tube-fed patients isstudies of this in older patients.8 One tion of ice chips, and lubrication of the substantial. In one study of 7,369 pa-study demonstrated that a history of pre- lips. Moreover, many elderly patients tients who underwent PEG tube place-vious aspiration is a poor prognostic fac- do not feel distress from dehydration ment, 23.5% of patients died during the32 Geriatrics June 2006 Volume 61, Number 6
  4. 4. FEEDING TUBEShospital admission and median survivalwas only 7.5 months.14 Another large Table 3 Decision-making approach to tube feedingstudy of 81,105 patients who underwent in patients with advanced dementiaPEG or surgical gastrostomy tube place- ᮣ Obtain advance directivesment found that 63% had died by 1 yearafter placement and 81.3% were dead ᮣ Consider ethical principlesby 3 years.15 Severe dementia is a termi- ᮣ Be aware of legal and financial concernsnal illness that is not reversed by feed- ᮣ Be sensitive to emotional factorsing tube placement. ᮣ Understand cultural backgroundDecision-making ᮣ Respect religious beliefsThe decision-making process regard- ᮣ Conduct a family meeting incorporating the above principlesing feeding tube placement is compli-cated because it is often influenced by Source: Created for Geriatrics by FA Cervo, MD, L Bryan, MD, and S Farber, MD.multiple non-clinical, non-evidencebased factors. The demonstrated lack Despite their importance, advance the overwhelming evidence indicatesof benefit for placement of feeding directives are not a panacea because that feeding tubes do not improvetubes in patients with advanced demen- they are often overruled by surrogates, health outcomes in patients with ad-tia only further complicates the physi- thus compromising the ethical princi- vanced dementia.4cian’s role in the process. To help guide ple of autonomy.16,17 LEGAL/FINANCIAL CONCERNS: Despite thethe primary care practitioner in this In the absence of an advance direc- lack of evidence of poor beneficial out-process, the following is an overview tive, substituted judgment dictates that comes, healthcare practitioners mayof the different issues involved. These decisions are made based on what a sur- feel legally bound to provide tube feed-include advance directives, ethical con- rogate believes the patient would choose ing to a patient with advanced demen-siderations, legal/financial concerns, if he or she had capacity.17 Surrogates tia who ceases to eat. In the highly reg-emotional factors, cultural background, are often uncertain or unaware of the pa- ulated nursing home environment,religious beliefs, and the need for a tient’s wishes regarding feeding tubes. practitioners may fear legal actionfamily meeting incorporating all of In this case, decisions may need to be based on the development of malnu-these principles (table 3). based on the patient’s best interests. trition or pressure ulcers. ADVANCE DIRECTIVES: Advance direc- Advance directive statutes and sur- Nursing homes are reimbursed at atives, such as healthcare proxies and rogate decision-making authority vary higher rate for tube fed patients; further-living wills, are critical in the decision- throughout the nation, making the de- more, hand feeding, which is moremaking process. Healthcare practition- cision-making process more difficult. nursing, labor intensive and time con-ers should make every attempt to ob- Healthcare practitioners need to be suming may not occur in accordancetain these directives from their patients knowledgeable of the laws governing with clinical trial protocols.3 These non-during office/clinic visits. The oppor- advance directives in the individual clinical factors often lead to feedingtunity may be lost if the patient devel- states in which they practice. tube placement.ops severe illness or loses decision- ETHICAL CONSIDERATIONS: Healthcare In New York State, clear and con-making capacity. Asking patients to practitioners have no obligation to of- vincing evidence is required for with-make sure you have a copy for your fer, recommend, or perform an inter- holding/withdrawing artificial nutri-chart is one option. Providing waiting vention that has no benefit. If an inter- tion and IV hydration without a health-room information on how/where to get vention has a benefit, then it should be care proxy. Reasonable knowledge ofone is another option. offered and recommended. If a clinical the patient’s wishes is required in cases Healthcare proxies should reflect benefit is uncertain, then decisions where a proxy has been designated. All Rights Reserved. Advanstar Communications Inc. 2006the patient’s specific wishes regarding should be based on patient/family val- EMOTIONAL FACTORS: Decisions concern-artificial nutrition and hydration. ues and preferences in concert with ing feeding tube placement in advancedWhereas living wills provide evidence discussion with the physician.18 Tube dementia patients are regularly madeof a patient’s wishes, designation of a feeding, as a form of medical therapy, by surrogates who are uncertain of theirhealthcare proxy may be preferable be- can legitimately be withheld if the risks loved one’s wishes and who feel emo-cause the practitioner can explain op- of the intervention outweigh the ben- tionally distressed.16 Decision-makingtions to a surrogate rather than inter- efits.4 Although the use of feeding tubes is often emotionally charged, and sur-preting a written document. is not unequivocally futile in all cases, rogates may lack a clear June 2006 Volume 61, Number 6 Geriatrics 33
  5. 5. FEEDING TUBESing and acceptance about the true na- individual’s cultural background may Participation by clergy or othersture of the illness.16,17 Although most need to be enlisted in order to resolve trained in pastoral care may help resolvepatients die despite tube feeding, a few these differences. religious conflicts.22 Some have sug-individuals survive for many years. RELIGIOUS BELIEFS: Religious beliefs of gested open discussion with patients andThis occasional outcome may foster patients must be factored into the de- families of the clinical and theologicalunrealistic expectations about the ben- cision-making process. Physicians need basis for requests concerning aggressiveefits of tube feeding.19 to be mindful that not all members of care (ie, feeding tubes). Practitioners Feelings of guilt and desperation are a religious sect prescribe to all its tenets. should use additional religious doctrineslikely to play substantial roles in the Here again, advance directives are help- from patients’ own traditions to balancedecision-making process.16 Tube feed- ful if they spell out individual patient the reasons behind such requests,24 ining may have a great symbolic value beliefs about such issues. Some Chris- this case, for tube feeding in the advancedand be perceived as a last means of pro- tian patients and families often demand dementia patient.viding care.19 Surrogates may be un- aggressive medical care because they FAMILY MEETING: All of the factors pre-able to bear the burden of allowing a hope for a miracle, or refuse to give up viously described herein play an im-loved one to die.16 Healthcare practi- faith, or believe that suffering may have portant role at the time of a familytioners must educate decision-makers redemptive value, or have a conviction meeting. A family meeting is essen-to understand that a gradual disinterest that every moment of life is a gift from tial, for it allows patients and their fam-in food is a normal and natural part of God (ie, preserve life at all costs).22 Pa- ilies to shift the goals of care from un-the dying process. This may help to al- tients or surrogates may feel that their realistic expectations of a cure to theleviate much anxiety and restore a cru- provision of comfort. At this meetingcial sense of control.20 it is important that the healthcare prac- CULTURAL BACKGROUND: The cultural back- Decision making is titioner discuss, in a risk/benefit con-ground of patients and their families may text, the lack of evidence supportingbe a pivotal factor in decisions concern- often emotionally feeding tube placement in patients withing tube feeding. The predominant West- advanced dementia. The risks and com-ern biomedical model is based on a charged, and plications of feeding tube placementmechanistic model of the human body, should also be explained in the contextseparation of mind and body, and dis- surrogates may of the patient’s illness and prognosis.20continuity of spirit and soul. not understand Families may feel that their loved ones ᮣ Native American traditions are will “starve to death” if tube feeding isbased on mind-body-spirit integration. the true nature not initiated. By understanding the meta-Life and death may be viewed in a cir- bolic processes that occur when patientscular, rather than a linear, pattern.21 of the illness stop eating, this fear can be allayed. Pa- ᮣ Many African-Americans are skep- tients with progressive dementia maytical and distrustful of mainstream med- be successfully managed by continuedicine, especially when making decisions preferences override the physician’s oral feeding, letting the natural courseabout end-of-life care. This may be due judgment (ie, futility).22 Family mem- of their disease define the extent and du- All Rights Reserved. Advanstar Communications Inc. 2006to experiences of segregation and mem- bers’ religious beliefs may lead to ag- ration of feeding.20ories of the Tuskegee experiment.21 gressive end-of-life care despite evi- ᮣ For many Asian-American elders, dence to the contrary. Summaryend-of-life decisions may be charac- In Judaism, sanctity of life and the PEG tube placement has become aterized by priority of family versus in- infinite value of human life are para- common, low-risk procedure in cur-dividual decision-making. Non-disclo- mount principles. However, the process rent medical practice. The clinical ev-sure of terminal illness to protect the of dying must be respected when it is idence supporting the use of tube feed-elder and the practice of not disturb- occurring, imminent, and irreversible.23 ings in patients with advanced demen-ing the body of a dying or dead person Islam similarly values sanctity of life, tia is clearly lacking, yet PEG proce-may also be prevalent.21 yet respects the inevitability of death. dures continue to be performed, and Cultural decision-making conflicts Autonomy is of primary importance tube feedings provided in a large num-concerning tube feeding require that in the Christian faith. Jewish and Mus- ber of cases. We have described anhealthcare practitioners listen carefully lim faiths respect autonomy but con- overview that includes some more im-to the views of patients and surrogates. sider it secondary to the patient’s health portant factors inherent to the issue ofInput from a source familiar with an and welfare as judged by clinicians.23 tube feeding in the advanced dementia34 Geriatrics June 2006 Volume 61, Number 6
  6. 6. FEEDING TUBESpatient. We hope this will guide and assist healthcare prac-titioners in this often difficult, confusing, and time-con-suming decision-making process. GReferences1. Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med 2004; 350(25): 2582-90.2. Roche V. Percutaneous endoscopic gastrostomy: Clinical care of PEG tubes in older adults. Geriatrics 2003; 58(11):22-9.3. Li I. Feeding tubes in patients with severe dementia. Am Fam Physician 2002; 65(8):1605-10.4. Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000; 342(3):206-10.5. Henderson CT, Trumbore LS, Mobarhan S, Benya R, Miles TP Prolonged . tube feeding in long-term care: Nutritional status and clinical outcomes. J Am Coll Nutr 1992; 11(3):309-25.6. Finucane TE. Malnutrition, tube feeding and pressure sores: Data are incomplete. J Am Geriatr Soc 1995; 43(4):447-52.7. Thomas DR. Improving outcome of pressure ulcers with nutritional inter- ventions: A review of the evidence. Nutrition 2001; 17(2):121-5.8. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA 1999; 282(14):1365-70.9. McCann R. Lack of evidence about tube feeding--Food for thought. JAMA 1999; 282(14):1380-1.10. Light VL, Slezak FA, Porter JA, Gerson LW, McCord G. Predictive factors for early mortality after percutaneous endoscopic gastrostomy. Gastrointest Endosc 1995; 42(4):330-5.11. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA 1994; 272(16):1263-6.12. Peck A, Cohen CE, Mulvihill MN. Long-term enteral feeding of aged demented nursing home patients. J Am Geriatr Soc 1990; 38:1195-8.13. Kaw M, Sekas G. Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Dig Dis Sci 1994; 39:738-43.14. Rabeneck L, Wray NP Petersen NJ. Long-term outcomes of patients , receiving percutaneous endoscopic gastrostomy tubes. J Gen Intern Med 1996; 11:287-93.15. Grant MD, Rudberg MA, Brody JA. Gastrostomy placement and mortality among hospitalized Medicare beneficiaries. JAMA 1998; 279:1973-6.16. Van Rosendaal GM, Verhoef MJ, Kinsella TD. How are decisions made about the use of percutaneous endoscopic gastrostomy for long-term nutritional support? Am J Gastroenterol 1999; 94(11):3225-8.17. Mitchell SL, Lawson FM. Decision-making for long-term tube-feeding in cognitively impaired elderly people. CMAJ 1999; 160(12):1705-9.18. Rabeneck L, McCullough LB, Wray NP Ethically justified, clinically com- . All Rights Reserved. Advanstar Communications Inc. 2006 prehensive guidelines for percutaneous endoscopic gastrostomy tube placement. Lancet 1997; 349 (9050):496-8.19. American Medical Directors Association. Clinical Practice Guideline: Altered Nutritional Status. AMDA: Columbia, MD; 2001.20. Easson AM, Hinshaw DB, Johnson DL. The role of tube feeding and total parenteral nutrition in advanced illness. J Am Coll Surg 2002; 194(2):225-8.21. Collaborative on Ethnogeriatric Education. Core Curriculum in Ethnogeriatrics, (2nd ed). Yeo G (ed). Stanford Geriatric Education Center: Palo Alto, CA; October 2000. Available online at: Accessed Feb. 8, 2006.22. Brett AS, Jersild P “Inappropriate” treatment near the end of life: . Conflict between religious convictions and clinical judgment. Arch Intern Med 2003; 163(14):1645-9.23. Clarfield AM, Gordon M, Markwell H, Alibhai SM. Ethical issues in end-of- life geriatric care: The approach of three monotheistic religions-Judaism, Catholicism, and Islam. J Am Geriatr Soc 2003; 51(8):1149-54.24. Orr RD, Genesen LB. Requests for “inappropriate” treatment based on religious beliefs. J Med Ethics 1997; 23(3) June 2006 Volume 61, Number 6 Geriatrics 35