Surrogates perceived that feeding tubes had greater benefits for patients with dementia than actually exist, results of small prospective survey indicate.
“Feeding patients with dementia through percutaneous endoscopically inserted gastrostomy (PEG) tubes has not been shown to improve functional status, nutritional status, or mortality, despite its frequent use,” Jeffrey T. Berger, MD, and colleagues from Winthrop University Hospital in Mineola, N.Y., wrote in Archives of Internal Medicine.
However, among the 39 surrogates who had consented to PEG tube placement for inpatients with late-stage dementia, 50% reported that they expected the PEG tube to improve the patient’s overall condition, and 10% expected improvements in function.
“Decisions for PEG may reflect an emotional response to avoid ‘starvation,'” the researchers wrote. “The personal, nonevidence-based views of many health professionals about tube feeding for cases of dementia may also contribute to PEG misuse.”
Limited knowledge regarding tube feeding may be to blame, according to the researchers. Responses from a questionnaire that surrogates completed one week after tube insertion showed that most thought that they had received adequate information about the procedure’s benefits (58% adequate, 40% very complete) and harms (65% adequate, 33% very complete).
Specific benefits recalled included improved nutrition (97%), strength (28%), condition maintenance (26%) and healing (13%).
Potential harms remembered from the consent process were bleeding (72%), infection (69%), perforation (59%), and aspiration (3%).
Despite expressing overall satisfaction with the informed consent process, the researchers pointed out that the true risk of aspiration was “vastly underrepresented,” and the likelihood of improved condition, overrepresented
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,” the researchers wrote.
When questioned about their decision making process, 56% of surrogates said that they based their decisions on what they thought were the patient’s best interests, whereas 10% said they knew the patient’s explicit wishes and 33% said they based their decision on inferred wishes.
Although 43% of patients had completed an advanced directive, 25% of surrogates indicated that they would go against these wishes to consent to feeding tube placement.
“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,” the researchers wrote.
They called for additional research to further examine surrogates’ decision making process, as well as physician behavior and bias.