Percutaneous endoscopic gastrostomy and outcome in dementia

Percutaneous endoscopic gastrostomy and outcome in dementia

THE AMERICAN JOURNAL OF GASTROENTEROLOGY © 2001 by Am. Coll. of Gastroenterology Published by Elsevier Science Inc. Vol. 96, No. 9, 2001 ISSN 0002-92...

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THE AMERICAN JOURNAL OF GASTROENTEROLOGY © 2001 by Am. Coll. of Gastroenterology Published by Elsevier Science Inc.

Vol. 96, No. 9, 2001 ISSN 0002-9270/01/$20.00 PII S0002-9270(01)02662-4

Percutaneous Endoscopic Gastrostomy and Outcome in Dementia T. S. Dharmarajan, M.D., F.A.C.P., A.G.S.F., D. Unnikrishnan, M.D., and C. S. Pitchumoni, M.D., M.P.H., F.A.C.P., M.A.C.G. Department of Medicine and Divisions of Geriatrics and Gastroenterology and Nutrition, Our Lady of Mercy Medical Center, Bronx, New York

ABSTRACT The use of percutaneous endoscopic gastrostomy for the administration of food and medications in patients with dementia has been on an increase. Many studies have failed to demonstrate the positive outcome expected of this feeding modality for the indications that required tube placement. Hence, the concept of feeding through gastrostomy tubes has become the subject of much discussion and controversy in recent times. We have reviewed the literature with regard to outcome in older patients with dementia and percutaneous endoscopic gastrostomy with respect to nutritional parameters, quality of life, and survival. A brief discussion on ethical and legal aspects is included. Much of the data do not suggest that outcome in dementia is favorably improved after percutaneous gastrostomy. (Am J Gastroenterol 2001;96:2556 –2563. © 2001 by Am. Coll. of Gastroenterology)

INTRODUCTION We are faced today with an aging society, as evidenced by population trends in the United States and the world over. Older adults comprise approximately 6% of the world population and 13% of the United States population (1, 2). Conservative estimates place the prevalence of dementia in the United States at approximately 4 million (of the 35 million elderly); this number is expected to rise to 14 million by the year 2040 (2, 3). Dementia, as defined by the Diagnostic and Statistic Manual IV criteria, denotes development of multiple cognitive deficits including memory impairment and loss of abstract thinking, judgment, language, or visual-spatial abilities significant enough to interfere with occupational and social functioning (4). The major cause of dementia is Alzheimer’s disease, with vascular basis the second leading cause. The prevalence of Alzheimer’s disease is nearly 50% in those aged 85 yr and older (2, 4, 5). In addition to cognitive impairment, the demented subject is very likely to have or develop several comorbid conditions including dysphagia, malnutrition, pneumonia, and immobility, causing considerable caregiver burden. Malnutrition in the elderly is a very common problem,

with a prevalence varying from 2% to 69% (1), the lower number reflecting the prevalence in the community and the latter the prevalence in institutionalized patients (hospitals and long term care facilities). Demented subjects are often unable to choose appropriate foods, feed themselves, and, in advanced cases, even eat with assistance (1). Further, cerebrovascular and neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease may be associated with neuropharyngeal dysphagia (6). The prevalence of dysphagia in nursing home residents is estimated to be around 43–59% (7). Individuals with advanced dementia are often bed ridden and partially or totally dependent for activities of daily living. Demented subjects may resist feeding, may be unable to guide food from the mouth to the esophagus and stomach, and, sometimes, may even forget the sequence of the swallowing act (6, 8). Aspiration pneumonia is a frequent complication in these circumstances. Administration of oral medications is also difficult in such situations. Alternate means of feeding become a consideration when the demented subject is unable to ingest food for any reason. Nutritional supplementation may be enteral or parenteral. As long as the gut is functional, enteral nutrition is the preferred route (9, 10).

DEMENTIA AND INADEQUATE FOOD INTAKE Advanced stages of dementia are often associated with neuropharyngeal dysphagia. Patients with dysphagia should be comprehensively assessed for an acute, reversible, superimposed illness leading to a temporary decline in cognitive status and swallowing function, as in delirium or depression. An enquiry into the food preferences, including unwarranted dietary restrictions, might help assess the reason for poor intake (6). A drug history should be carefully obtained, as several medications are known to interfere with the process of food intake—for example, xerostomia from anticholinergics, esophagitis from alendronate, and ageusia from angiotensin-converting enzyme inhibitors (6, 8). Altering the drug regimen in these instances may help improve dietary intake. A meticulous attempt at hand feeding should be made in all patients, with maximum use of facilitatory swallowing

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Table 1. Indications Cited in Literature* for PEG Placement in Subjects With Dementia Patient related Dysphagia Maintain adequate nutrition Maintain hydration Prevent and heal pressure sores Prevent aspiration pneumonia Prolong survival Patient comfort, minimize suffering Tide over acute illness Not patient related Financial considerations Minimize caregiver burden Values/religious beliefs * Refs. 6, 9, 12–16, 18, 20, 21, 25, 27, 30, 36, 57.

methods and environmental support (6, 8, 9). Patients who fail these measures should have a formal speech and swallow evaluation, with confirmation of the swallowing defects by modified barium swallow or videoflouroscopy (6, 9). When the normal modality of oral feeding is not possible, enteral alimentation is accomplished by tube feeding. Three routes are available: nasogastric, percutaneous or surgical gastrostomy, and jejunostomy. In general, nasogastric tubes are used in demented individuals or others for short term use (days to weeks), as opposed to gastrostomy and jejunostomy routes that are used long term (months to years) (11). Typically, when a demented subject capable of self-feeding develops an acute illness (e.g., delirium or stroke), nasogastric feeding may help tide over the situation; the use here is not controversial. Jejunostomy, the least used route, is associated with clogging and diarrhea, and the smaller caliber of the tube often precludes bolus feeding (9).

PERCUTANEOUS ENDOSCOPIC GASTROSTOMY The procedure of endoscopically placing a feeding tube into the stomach is a means of providing long term enteral nutrition for individuals with insufficient food intake (12). In 1995 around 121,000 gastrostomy tubes were placed in the United States, 30% in patients with dementia (3, 13, 14). The advantages of percutaneous endoscopic gastrostomy (PEG) over surgical gastrostomy include avoidance of surgery and general anesthesia, especially in the elderly; shorter procedure time; fewer complications; lower cost; and cosmetic benefits (9 –12, 15–18).

INDICATIONS FOR PEG FEEDING IN DEMENTIA The common indications cited in the literature for PEG in patients with dementia are listed in Table 1. Health care providers and surrogates often point out nutrition and hydration as reasons for tube placement (13, 15). In neurogenic dysphagia, prevention of aspiration pneumonia is cited as another therapeutic goal (8, 13, 19, 20). PEGs have been done in an attempt to reduce hospital stays and costs, trans-

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ferring chronically ill patients to less expensive and less intensive facilities and having less prolonged stays in long term care facilities (6, 13, 15, 16, 21, 22). It is also evident that, at least in some cases, the placement is guided by caregiver convenience (13, 15). In the institutionalized elderly, a decision to place a feeding tube is driven by regulations requiring maintenance of “acceptable parameters of nutritional status” in residents, especially in the face of poor oral intake and declining weights (3). The decision to do a PEG is usually undertaken during hospitalization for an acute illness (13, 15). Often, it is the health provider who suggests the PEG; the caregiver initiates the discussion in only a minority of cases (15). In dementia, as is expected, patient preferences are seldom known and decisions are made depending on the caregiver’s judgment, beliefs, and values (23). In an analysis of nursing home residents’ preferences, 33% of patients who were able to understand use of enteral feeds wanted tube feeding (24). In another survey, 47.9% of the surrogates were confident that their decision would have matched those of the patients, if they were able to express their preferences (22).

OUTCOME Whether placement of a feeding tube improves outcome or not has been controversial (13). In this regard, we analyzed data from several studies in older demented patients after PEG insertion, with relevance to outcome. Randomized control studies were conspicuously absent, as expected with a subject steeped in ethics and basic human values. Bearing in mind the lack of quality prospective studies, we used the available data and classified outcomes into short term and long term, the former referring to events occurring within 30 days of the procedure. Long term outcomes are discussed in relation to the indications for tube placement, an effort being made to determine whether the expected benefits materialized. The long term outcomes assessed include 1) survival; 2) nutritional parameters; 3) pressure sores and other infections; 4) functional status, comfort, and quality of life (QOL); and 5) moral, ethical, and legal concerns. Data were gathered from a total of 19 studies, 11 of them published in the last 3 yr. The two largest studies were an analysis of 81,105 hospitalized Medicare beneficiaries with gastrostomy and a retrospective study of 7,369 patients with PEGs (mean age ⫽ 68 yr) from the Veterans Affairs hospitals (14, 25). The other studies analyzed between 46 and 360 patients. Although none of them were randomized controlled studies, an effort was made to compare patients with dementia and PEGs to those without gastrostomies and to compare dementia with other subgroups on tube feeding (20, 26, 27). Parameters that were analyzed to assess outcome were not uniformly available in all studies. Short Term Outcome The complications related to the procedure itself are few; nevertheless, there are low mortality and morbidity associ-

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Table 2. Short Term and Long Term Mortality After PEG Placement

Verhoef and Van Rosendaal (34)* Callahan et al. (13, 15) Sanders et al. (26) Fisman et al. (32)* Nair et al. (27) Grant et al. (14) Loser et al. (58)* Rabeneck et al. (25) Finocchiaro et al. (59) Light et al. (60)* Kaw and Sekas (16) Stuart et al. (21) Wolfsen et al. (61) Ciocon et al. (36)

Year

Number of Patients

In-Hospital and 30-Day Mortality (%)

2001 2000 2000 1999 1999 1998 1998 1997 1997 1995 1994 1993 1990 1988

71 150 361 175 56 81,105 210 7,369 136 416 46 48 191 70

27 22 28 18.3 23.9 27 23.5 9.5 23.3 20 31 21 11

1-yr Mortality (%) 39 50 63 61.1 44 (6 mo) 63 66 59 58 50 60 (6 mo) 41

* Includes younger patients also.

ated with PEG. The rate of procedure-related complications ranges from 0% to 2% (8, 25, 28, 29), and the perioperative mortality is 6 –28% (8, 12, 17, 18, 25, 30). This high perioperative mortality may well be the result of the primary illness; the patients often died even before formal evaluation for placement of the feeding tube (8, 12, 25). Callahan et al. (13) studied 150 patients (mean age ⫽ 78.9 yr), three fourths with cerebrovascular and neurodegenerative disease, for a period of 14 months after PEG placement. The authors note a mortality of 16% before baseline assessments were completed. In an analysis by Grant et al. (14) regarding survival in 81,105 hospitalized Medicare beneficiaries over age 65 who underwent feeding tube placement in 1991, an inhospital mortality of 15.3% was confirmed. Most studies place the 30-day mortality at 4.1–28% (30). A 30-day mortality of 23.9% was documented in a study of 7369 patients, the number increasing to 27% in those aged 85 and older (14). In an evaluation of 361 consecutive patients in the United Kingdom who underwent PEG placements, a higher mortality was noted in cognitively impaired individuals relative to other groups without dementia; a 30-day mortality of 54% and 1-yr mortality of 90% were documented in demented patients, compared to 28% and 63%, respectively, in the entire cohort (26). Another recent prospective evaluation of 99 hospitalized patients with advanced dementia failed to show a benefit of tube feeding in survival (31). Comorbid illnesses often dictate the outcome after PEG placement. At 30 days, it was observed that a diagnosis of pneumonia, cardiac failure, influenza, or neoplasm carried a higher mortality than malnutrition or fluidelectrolyte disorder in demented patients (14, 32). It has been claimed that insertion of the gastrostomy tube under radiological guidance is associated with a lower incidence of tube-related complications (18). A summary of the short term and long term mortality in selected studies where pertinent data were available is given in Table 2.

Long Term Outcome SURVIVAL. A prolonged survival was the most cited reason for the acceptance in one third of nursing home residents presented with a hypothetical vignette on future tube feeding (20). Eighty-four percent of surrogates who had opted for tube feeding for their loved ones perceived prolongation of life as the reason for PEG (22). An understanding of survival in individuals with cognitive impairment is therefore essential and critical in decision making. The rate of long term complications related to the tube itself is placed between 32% and 70% (3). The median survival of patients who died during the “index hospitalization” was as low as 26 days after PEG placement in the cohort studied by Rabeneck et al. (25). The long term survival of those who survived the index hospitalization was 9.5 months for patients ⬍65 yr, 7.5 months for those 65–74, and 5.7 months for those ⬎75 yr of age. Survival after PEG placement in some of the largest studies has been around 7 months, the median ranging from 3 to 12 (8, 25, 33). Sixty-three percent died 1 yr after feeding tube placement, and 81.3% were dead at 3 yr (8). The mortality rate has not been uniform in different patient groups; as expected, older patients had a higher mortality rate (14, 21, 25). In one series all patients ⬎40 yr of age survived after PEGs, compared to 41.3% of survivors in those older than 40 yr (16). Men had a higher mortality rate than women, whereas African-Americans had a lower 30-day mortality (14). Most studies have concluded that the presence of acute illnesses like pneumonia or cerebrovascular disease is the most important negative prognostic factor (21, 25, 30). Consequently, a higher mortality was noted in patients who had PEGs placed during acute hospitalization relative to those who had the procedure electively as outpatients from nursing homes: 29% and 4%, respectively (30). A better survival was seen with cerebrovascular or organic neurological disease (13.5 months) than with a diagnosis of malignancy, with a survival of 8 months

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Table 3. Nutritional Parameters and PEG in Patients With Dementia Study Callahan et al. (13)

Patients

Observations

150

13.4% of patients had 1-g/dl improvement in albumin, in 72 survivors No significant change in weight, cholesterol, and body mass index in survivors at 60 days Stabilization of weight over 2 mo in 56 survivors Beyond 6 mo, weight loss apparent in several patients Albumin stable for 1 mo after tube insertion No significant change in albumin or cholesterol levels in survivors At 6 mo, 30% had increase and 30% had decrease in albumin Weight gain in 50% at 6 mo, 38% at 13 mo Albumin ⬍ 2.8 g/dl at time of PEG marks poor survival at 6 mo

Ciocon et al. (36)

70

Kaw and Sekas (16)

46

Nair et al. (27)

56

in head and neck cancers and 1.8 months in lung cancer (21, 25). More recently, a study of 168 patients, including younger ones (16 –98 yr, mean age ⫽ 70), observed that 67% of the patients were alive at 2 yr. Three fourths of the subjects in the study group had PEGs placed for neurological disease (10). Perhaps the lower mortality in some series is influenced by the inclusion of younger patients as well. Nutritional status and comorbid illness also seem to influence outcome. Hypoalbuminemia particularly has been noted as a reliable predictor of survival, when present in dementia (16, 27). Nair et al. (27) observed 55 patients with dementia after PEG placement and suggested that only 50% of patients with dementia and inadequate oral intake are likely to survive beyond 6 months after feeding tube insertion; a low serum albumin of 2.8 g/dl at the time of the procedure was an indicator of poor survival at 6 months. It is suggested that PEGs may have been placed after the onset of severe hypoalbuminemia in these cognitively impaired individuals, thus unfavorably affecting the outcome (27). In another study of 1386 nursing home residents with dementia, Mitchell et al. (20) compared 135 patients who underwent PEG placement and those without feeding tubes. Analysis showed that tube status did not prolong survival. They documented that, after assessment of independent risk factors, feeding tubes were the least important determinant of survival. Studies in nursing home patients with advanced dementia did not show a difference in survival with tube feeding or hand feeding. Further analysis showed that the swallowing difficulty was an independent predictor of mortality in dementia regardless of the presence of a gastrostomy tube (3, 6). We therefore believe that coexisting swallowing disorders with a tendency to aspirate increase mortality in cognitively impaired individuals. Interestingly, patients started on tube feeds did not stay on this feeding modality forever. Out of a cohort of 123 patients studied by Callahan et al. (13), 15 patients who had PEGs removed returned to oral feeding. A recent report from Australia noted that one fifth of patients had PEGs removed in a median time of 4.3 months (10). In a follow-up of 71 patients with PEGs in Canada (age group ⫽ 17– 89 yr, mean ⫽ 66), Verhoef and Van Rosendaal (34) observed that, at 1 yr, patients who still had PEGs were more likely to be in nursing homes than those whose PEGs were removed; overall PEG removal was 28% in this group. Other

studies reported an average of 10 –20% of patients returning to oral feeds. Possible explanations for a return to oral feeding include recovery from neurological vascular injury or partial recovery of the strength of the swallowing muscles (6). IMPROVEMENT IN NUTRITIONAL PARAMETERS. Meaningful improvement in nutritional parameters has not been seen in most studies; neither is there evidence for significant improvement in malnutrition-associated illnesses such as infections or pressure sores (13, 27–29). Lack of improvement in nutritional parameters may be attributed to inadequate caloric intake because of mechanical complications like clogging or dislodgement, nutrient losses as in diarrhea, or increased catabolic demand in acute illnesses (3, 8). Even in instances where adequate calories were provided, weight loss and depletion of lean and fat body mass have been documented (8). Observations in various studies are summarized in Table 3. Nevertheless, a small number of patients have shown improvement in nutritional parameters and weight gain with tube feeding (11, 13, 16). When an improvement in serum albumin was documented, it appeared to correlate with improved survival. Only 5% of patients who survived in one series showed a decrease in serum albumin on follow-up (13). PREVENTION OF ASPIRATION PNEUMONIA. Studies have not substantiated that PEG feeding reduces the risk of aspiration pneumonia (3, 8, 11, 13, 19, 20). In an analysis of all MEDLINE-searched articles from 1991 to 1995, Finucane et al. (8, 19) concluded that feeding tubes do not decrease the risk of aspiration in neurogenic dysphagia. In an analysis of 69 long term care residents in a Veterans Affairs facility who suffered 98 aspiration events over a period of 8 months, Pick et al. (35) determined that the risks of aspiration and pneumonia were increased with both nasogastric and gastrostomy tubes. Their data suggested that enteral feeding is an independent predictor of aspiration. The rate of aspiration pneumonia in different cohorts of patients ranges from 5% to 58% (9, 19, 25, 29). Some studies even showed an increase in aspiration resulting from decreased lower esophageal sphincter pressures, at times more than in orally fed patients with dysphagia (8, 19).

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In nursing home patients with feeding gastrostomy tubes, aspiration pneumonia is still among the leading causes of death, particularly in those with severe cognitive impairment (20). Other studies have documented aspiration as the reason for the majority of deaths in tube-fed patients (8, 9, 16, 36). The most significant risk factor for aspiration pneumonia in these individuals is a history of prior aspiration (11). Neither has the beneficial effect of jejunostomy tubes in lowering the incidence of aspiration been substantiated (3, 8). PRESSURE SORES AND INFECTIONS. Much has been said about the relationships between pressure sores and nutrition. Low body weight, hypoalbuminemia, low total lymphocyte count, and other poor nutrition parameters are strongly associated with pressure sores (37). Although pressure sores are suggested as an indication for enteral nutrition, data have not shown an efficacy of tube feedings in preventing formation of new pressure sores or healing of existing ones (8). On the contrary, some studies have suggested that incidence of pressure sores is increased in tubefed patients. This may be related to increased use of restraints, immobility, fecal incontinence, and diarrhea, all of which are usually seen in the ill tube-fed patient or as accompaniments of tube feeding (20, 38). There are no data to suggest that there is a decrease in the incidence of urinary, GI, viral, or other infections in demented patients on long term enteral feeding (8). The presence of feeding tubes may even be the reason for significant local and systemic infections such as cellulitis, diarrhea, or bacteremia (8, 19). FUNCTIONAL STATUS, COMFORT, AND QUALITY OF LIFE. In demented tube-fed individuals, the functional status as measured by instruments (activities of daily living and instrumental activities of daily living) or strength has not shown measurable improvements (8, 13). A retrospective study of nursing home patients who underwent PEG placement over the years 1988 –1990 and were observed for a period of 18 months did not demonstrate a benefit in functional status either (16). Comfort and QOL are often not easy to assess because most patients with advanced dementia cannot narrate their subjective feelings. It has been variably argued that provision of food and hydration promotes comfort, although this has not been validated (3, 8, 39, 40). Thirst and dry mouth experienced by demented individuals can be managed with the use of swabs and ice chips (22, 39, 41). The distress of dehydration may not be as intense, because thirst sensation is impaired in demented persons; hydration alone is suggested as being helpful in preventing delirium (3). The institution of tube feeding is generally associated with social isolation, depression, and, more importantly, a denial of the joy of eating in patients with some residual swallowing function (6, 8). At the 5-wk follow-up of 58 caregivers of patients with new PEG insertion, 64% said there was no change in the patient’s QOL, 19% thought

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QOL had improved, and 17% felt it was worsened (23). In this particular survey, most surrogates felt that their decision was correct and would have acted similarly given a second chance, but were unsure if the patient would have made the same decision (23). It was noted that increased surrogate age was associated with lower surrogate satisfaction (23). In a study using questionnaires to evaluate health-related QOL after PEG, including 55 of the 102 patients who were still living, the questionnaires could be answered in only less than half of the patients, and appeared to suggest a positive impression of the gastrostomy, which did not necessarily translate into a better nutritional state (42). On the other hand, gastrostomy tubes can be the reason for patient discomfort (13, 28, 43). It is quite possible that the demented individual, failing to appreciate the purpose of the PEG, may try to pull the tube out, resulting in selfinjuries and increasing the need for restraints (44, 45). A restraint rate of up to 71% has been noted in studies (3). This can result in behavioral changes such as agitation, requiring the addition of sedative-hypnotics or antipsychotics. The use of restraints questions the autonomy and dignity of the individual patient in addition to being a source of discomfort (29). Whether restraints and complications of the procedure and feeds like bloating, diarrhea, or leakage add to potentially prolonged suffering of the ill demented patient remains controversial (15). MORAL, ETHICAL, AND LEGAL CONCERNS. Although medical guidelines suggest that artificial nutrition and hydration do not differ from other forms of medical treatment, many health care providers do not equate the two and consider that nutrition and hydration should be continued even if burdensome to the patient (3, 39, 46). The American Medical Association has defined artificial nutrition and hydration as “medical treatment,” and like any other form of medical treatment, they may be withheld when deemed medically or ethically appropriate (15, 39). The majority in a study of 1446 physicians and nurses were of the opinion that feeding and hydration should be maintained even when all other life-sustaining treatment modalities have been stopped (3, 47). Many believe that a failure to provide nutrition and hydration is morally wrong (39). Frequently, beliefs are based on values and religious principles. The Roman Catholic position on the use of hydration and nutrition at the end of life is that “there should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration,” warranted as long as it is of sufficient benefit to change the course (3). The Orthodox Jewish tradition, while advocating interventions that might prolong life, rejects those that cause or prolong suffering (3, 48). Legal and regulatory issues are also influential in decision making (49 –53). Some states in the United States, like Missouri and New York, have adopted policies on artificial feeding and hydration. Such laws state that tube feeding is

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a life-sustaining treatment and the state has an interest in prolonging life (3). In the landmark case of Nancy Cruzan, the United States Supreme Court has held that a decision to withhold tube feeding required “clear and convincing evidence that the individual would not have wanted it” (23, 50 –52, 54). The cases of Karen Ann Quinlan and Helga Wanglie are other notable instances where a conflict on continuation or withdrawal of life-sustaining treatment, including artificial feeding in patients with persistent vegetative states, has reached the courts (53). Overall, there is “consensus that families or other proxies may authorize the discontinuation of life sustaining treatment” (53). Insistence on continued treatment, even in futile cases, has generally been upheld (55). Because of similar legal and regulatory issues, health providers have a fear of prosecution for failing to provide nutrition in patients unable to ingest adequate calories and water. Therefore, we believe the decision is complex, involving a patient without capacity, the surrogate, the physician, and other health professionals, working within the framework of the law, professional principles, patient preferences (if known), values, and ethical beliefs.

CONCLUSION Subjects with advanced dementia often have malnutrition coupled with an inability to ingest adequate fluids, nutrition, and medications. Inability to feed is often a late event in the progression of dementia; it has been suggested that this stage may indicate a preterminal condition where enthusiastic feeding via PEG may not alter the outcome (3, 26). The need for a feeding tube itself is sometimes regarded as a marker of severe associated illness (32). Although PEG placement itself is associated with a definite but low morbidity and mortality, many patients die within 30 days. A delay in PEG insertion and an attempt to feed by other means (e.g., nasogastric) for several days may be worthwhile, because many ill patients may not survive the primary illness that necessitated long term placement of the tube (30). Importantly, an attempt should be made to respect the patient’s wishes if expressed previously (23, 54), though decisions on advance directives and on tube feeding in particular are frequently unavailable. This implies a need for better “advance care planning” extending beyond the limits of cardiopulmonary resuscitation, addressing specifically the issue of long term enteral feeding (22, 32). Most studies conclude that tube feeding is seldom warranted in late dementia with comorbid illnesses (3, 20). Data do not support significant improvement in nutritional status, QOL, or survival in this group (3, 8, 13, 15, 16, 25–27). Therefore it is appropriate that the surrogate be fully informed of 1) the diagnosis and prognosis of the primary illness and 2) the long term burden and benefits of placing a feeding tube, without excessive optimism (15, 23). A detailed discussion with the decision maker should include “evidence-based” information regarding survival in patients with dementia, concerns of comfort and QOL, and the

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complications and burden of tube feeding (23, 27, 33, 43). This should be followed up with an ongoing discussion on the appropriateness of its continued use (3, 23, 33). If there is some recovery of swallowing function, removal of the tube and return to the pleasures of oral feeding might improve the QOL of a dependent demented individual (28). Decisions about treatment should ideally be made on an interdisciplinary and multidisciplinary basis (6). Although tube feeding may not be totally futile in all cases, an analysis of the benefits and risks seldom leads to a definite positive result in cognitively impaired individuals (3, 26). Aggressive tube feeding demonstrates, in the opinion of a recent editorial (43), “unwarranted optimism” with little promise. Is the tube a burdensome intervention with little benefit or a noninvasive means of delivering nutrition to an individual who cannot eat? Are we merely prolonging the dying process without decreasing suffering (13, 26)? In an analysis on 20 yr of PEG, Michael Gauderer, the pioneer of the concept in 1980, concludes that the procedure “lends itself to over-utilization” because of its simplicity and low complications (56). He comments that efforts should be directed at assessing the ethical aspects of long term enteral feeding with patient “benefit” as the primary goal (56). In view of the fact that outcomes do not necessarily improve, it is prudent for the health provider to exercise caution in decisions regarding PEG placements in dementia. Reprint requests and correspondence: T. S. Dharmarajan, M.D., Our Lady of Mercy Medical Center, 4141 Carpenter Avenue, Bronx, NY 10466. Received Dec. 4, 2000; accepted June 5, 2001.

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