Author Affiliations: Divisions of Geriatric Medicine (Dr Berger) and Gastroenterology (Drs Hida, Friedel, and Grendell), Department of Medicine, and Office of Health Outcomes Research (Dr Chen), Winthrop University Hospital, Mineola, New York.
Feeding patients with dementia though percutaneous endoscopically inserted gastrostomy (PEG) tubes has not been shown to improve functional status, nutritional status, or mortality, despite its frequent use.1- 3 Because anorexia due to dementia follows a loss of decision-making capacity, a surrogate's consent is generally required for PEG tube insertion. Unfortunately, surrogate decisions are often inaccurate,4 and elderly patients generally reject PEG feeding for a condition of dementia.5 General deficiencies in informed consent also contribute to the misapplication of PEG tubes.6,7 In addition, decisions for PEG may reflect an emotional response to avoid “starvation.” Lastly, the personal, nonevidence-based views of many health professionals about tube feeding for cases of dementia may also contribute to PEG misuse.8
After institutional review board approval, 39 persons who had provided consent for PEG tube placement for inpatients with stage 7 dementia according to the criteria from Reisberg et al9 were enrolled, with an inclusion rate of 100% (Table). A questionnaire developed for this study elicited information about the process and content of consent including expectations for PEG and the ethical basis for the surrogate's decision. Responses were collected within 1 week of PEG tube placement (T1), and approximately 2 months after placement (T2). Data were analyzed with a χ2 test or Fisher exact test. Logistic regression analyses estimated effects of demographic variables. P < .05 represented statistical significance.
At T1, respondents described the information provided about benefits of PEG as very complete (n = 16; 40%) and adequate (n = 22; 58%), and information about harms as very complete (n = 13; 33%) and adequate (n = 25; 65%). All 39 respondents recalled specific benefits and harms of PEG. Benefits were improved nutrition (n = 38; 97%), improved strength (n = 11; 28%), maintenance of condition (n = 10; 26%), and improved healing (n = 5; 13%). Harms were bleeding (n = 28; 72%), infection (n = 27; 69%), perforation (n = 23; 59%), and aspiration (n = 1; 3%). Thirty-seven respondents (95%) recalled alternatives to PEG. These were nasogastric tube feeding (n = 30) and simply no feeding (n = 7).
At T1, 31 respondents (80%) were very satisfied or somewhat satisfied with the consent process, and 36 (93%) would definitely or probably make the same decision if presented again with the choice. On logistic regression, satisfaction with the decision inversely correlated with patient age (odds ratio, 0.72; P = .02). Respondents identified the decision-making standard that most closely represented the basis for consent for PEG; 4 (10%) stated that they knew the patient's explicit wishes, 13 (33%) made a substituted judgment based on inferred wishes, and 22 (56%) perceived PEG as serving the patient's best interests. Respondents identified anticipated benefits of PEG: 4 (10%) cited improved function, 20 (50%) reported improvement in overall condition, and 10 (26%) reported maintenance of current condition. Only 5 respondents (13%) expected a decline in overall condition. Fifteen respondents (38%) reported that they would not consider discontinuing PEG tube use under any circumstance, 22 (58%) would discontinue it because of a further diminished quality of life, and 1 (3%) would discontinue PEG tube use if the patient's quality of life did not improve. Seventeen respondents (43%) reported that the patient had previously executed an advance directive.
Ten respondents (25%) would consent to PEG even if they knew that the patient had expressed a contrary preference. These surrogates were more likely to be older, a spouse, and Catholic (P = .049, .047, and .07, respectively). Twenty-eight respondents (70%) reported wanting a PEG tube for themselves under a hypothetical condition of advanced dementia.
Satisfaction with the PEG decision decreased between T1 and T2 (χ2 = 15.234; P < .001). Probability of reconsenting to PEG decreased as well (χ2 = 11.595; P = .001). There was no significant change from T1 to T2 for responses about the basis of the consent, the anticipated benefits, the conditions under which they might choose to discontinue the PEG, or the likelihood of consenting to PEG if the patient had previously declined it. At T2, fewer respondents (n = 20; 53%) would want to have a PEG tube for themselves under a hypothetical condition of dementia (χ2 = 10.917; P = .001).
The PEG consent process remains problematic. Despite surrogates' favorable rating of the process, their knowledge of PEG was very limited. For example, risk of aspiration was vastly underrepresented and the likelihood of improved condition was overrepresented. Respondents' most often cited patient's best interests as the ethical basis for PEG. However, objective data does not support such expectation of benefit. Perhaps surrogates base decisions on considerations not well captured by this study, such as personal biases, anticipatory grief, or lack of options. Certainly, surrogates were ignorant of palliative alternatives. Motivation for PEG decisions remains unclear.
These data underscore the need for a more robust process for PEG consent, which should include verification of surrogates' factual knowledge about PEG to ensure realistic expectations. Decision support tools such as standardized, multimedia, educational interventions should be explored as part of a quality improvement process. Because feeding, orally or medically, carries great symbolic and emotional weight for surrogates, psychosocial supports and palliative care resources should also be integrated into the consent process. Further research is warranted, including sociologic research on decision-making processes by distressed surrogates and research on physician behavior and bias during the consent process.
Correspondence: Dr Berger, Department of Medicine, Winthrop University Hospital, 222 Station Plz N, Ste 518, Mineola, NY 11501 (firstname.lastname@example.org).
Author Contributions:Study concept and design: Berger, Hida, and Friedel. Acquisition of data: Hida, Friedel, and Grendell. Analysis and interpretation of data: Berger, Chen, Friedel, and Grendell. Drafting of the manuscript: Berger and Grendell. Critical revision of the manuscript for important intellectual content: Berger, Hida, Chen, and Friedel. Statistical analysis: Chen. Administrative, technical, and material support: Berger, Hida, Friedel, and Grendell. Study supervision: Berger and Grendell.
Financial Disclosure: None reported.
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