Mrs. Pleasant is an 85 year old woman brought into the ER by her son for poor appetite. Mrs. P is demented secondary to progressive Alzheimer’s disease and has had 3 hospitalizations in the last year for pneumonia, possibly related to aspiration. Upon physical exam, she is oriented to herself, but is unable to provide any other information. She denies pain and appears to be in no distress. Her vital signs are within normal limits. She appears cachectic with temporal and thenar wasting. Remainder of physical exam is noncontributory. Laboratory evaluation reveals normal values with the exception of an elevated BUN/Cr consistent with dehydration. Mrs. P is admitted for IV hydration and evaluation for weight loss. After a thorough work-up, it is determined by her multidisciplinary team, that worsening dementia is the cause of her anorexia. A family meeting is called to create a treatment plan. Mrs. P’s son believes that his mother would not want a feeding tube. Her son is all the family that Mrs. P has and she unfortunately did not sign a living will or a health care proxy. The team calls an ethics consult to determine what to do next.
Dr. Joseph Lowy:
Decreased oral intake due to anorexia and/or dysphagia is a predictable terminal stage of advanced dementia. Pneumonia related to aspiration or not, is a common complication. Anorexia is not an apparent source of suffering for patients with advanced dementia. Nasogastric tubes for feeding, on the other hand, may be. Seventy percent of patients with dementia in whom NG tubes are placed require restraints at some point to prevent removal. Artificial feeding (by feeding gastrostomy) has never been shown to prevent pneumonia and NG tubes predispose to aspiration.
In one survey of nursing home patients, more than two-thirds said they would not want artificial feeding tubes in the setting of advanced dementia.1 In this study, 33% of residents initially said they would want feeding tubes if in an impaired mental state, but 25% of those patients changed their minds and said no to feeding tubes when they learned all that was involved such as the possible placement of restraints. In the case of Mrs. Pleasant, it is suggested that this patient does not have decision-making capacity, but it should be noted that this capacity is specific to the decision to be made. Patients disoriented to time and place may still understand a discussion of artificial nutrition and hydration or other life sustaining treatments, and may be deemed to have capacity to comprehend the consequences of their decisions. In the absence of a living will, verbal statements, or a designated health care agent (pursuant to a Health Care Proxy in NYS), most states allow for a surrogate decision maker to provide substituted judgment for health care decisions in addition to DNR. New York State does not.
New York State mandates the provision of artificial nutrition for patients who are not receiving ‘sufficient’ nutrition unless there is ‘clear and convincing’ evidence that they would not want it. While the meaning of ‘sufficient’ nutrition is gray and cloudy, the definition of clear and convincing evidence is much more black and white. This evidence must be either a written statement, such as Living Will, or a verbal statement to which a witness is willing, if necessary, to sign an affidavit.
The belief of the son (who is not a health care proxy) that his mother would not want artificial nutrition doesn’t meet this standard. However, a patient taking any fluids and/or food need not receive artificial nutrition and hydration if this is not deemed in the best interest of the patient and careful consideration of the risks and benefits as outlined in the first paragraph. Therefore, the patient should be provided with any fluids or food she is willing and able to handle without the need for the insertion of a feeding tube.
1. Linda A. O’Brien RN, MA, et al. Tube feeding preferences among nursing home residents. J Gen Int Med. 1997 June; 12: 364-371.
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