Response to Allen G. Sandler's (2009) article, "The right to nutrition and hydration: a need for vigilance".

03Original abstract

Allen Sandler (2009) argued appropriately about the need to be cautious before concluding that the sudden onset of lethargy, lack of responsiveness, noncommunication, and refusal to eat or drink in a severely intellectually disabled person signals a terminal illness that justifies transfer to hospice. I am concerned, however, that he believed the intervention required in this scenario was the placement of a gastrostomy tube (I assume that he means a percutaneous endoscopic gastrostomy [PEG] tube.) He correctly noted thatclinicians mustmakea distinction between the futile and possibly unwelcome (by the patient) use of gastrostomy tube feedings at the end of life and the use of PEG feedings to restore caloric balance inpersons with a chronic disabilitywhose food refusal is not related to the process of dying. To illustrate his point, Sandler (2009) described the case of a 49-year-old woman named Alice with congenital hydrocephalus, blindness, and profound intellectual disability, who ‘‘for unknown reasons...became lethargic and unresponsive, stopped talking, and stopped eating and drinking’’ (p. 234). Sandler stated that she had had a complete medical evaluation, ruling out any acute infectious process, metabolic derangement, intracranial process, or other potentially treatable condition. We are left with an undiagnosed illness, most likely pseudodementia due to severe depression (Angus & Burakoff, 2003). Her guardian and physicians believed this represented a terminal condition and that it was not in her best interests to insert a PEG tube. The reader is told that her guardian reasoned, in part, that eating (she could feed herself with assistance) was one of her significant pleasures, which she was no longer doing, and that PEG tubes are ineffective in prolonging life and may cause suffering. She was diagnosed with failure to thrive and placed in hospice. In this new environment she recovered her desire to eat and was subsequently discharged, having returned, apparently, to her prior functional level. Sandler believed that the decision not to insert a PEG tube placed Alice at risk and was based on ‘‘fear and the lack of accurate information’’ (p. 236). He felt she was at risk of dying, but there is another risk I want to address. That is the risk of using an invasive procedure (PEG tube placement) for behavioral food refusal before taking other appropriate steps out of respect for a person with more at stake than calories. The same principles apply to people who are intellectually disabled as to the intellectually ‘‘normal’’ person. First, to reiterate, the sudden onset of lethargy, lack of responsiveness, and refusal to eat or drink warrant a careful medical evaluation to look for treatable conditions. Second, if no disease is identified, psychiatric consultation should be obtained to look for evidence of an anxiety disorder or clinical depression. If found, this should be treated. Third, if the food refusal is believed to be behavioral in nature, identifying the person who knows her well enough to interpret the behavior is a critical step. If indicated, behavioral therapy should be initiated, using positive reinforcement to improve responsiveness and reward oral intake. Fourth, if refusal to eat or drink is protracted and results in dehydration, intravenous fluids should be given to improve general well being, with attention to applying a local anesthetic to the skin prior to intravenous insertion. Last, if it is clearly justified to override that patient’s food refusal (i.e., evidence that the lethargy and food refusal are reversible with appropriate therapy), nasogastric feedings using a small-bore feeding tube can be used for up to 6–8 weeks (Angus & Burakoff, 2003). Rarely would it seem justified to place a PEG tube in a case like that described by Dr. Sandler in his article. Informed consent from the patient or surrogate would be required and was appropriately sought in the case presented. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 1: 73–74 | FEBRUARY 2010

Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.1.73