Experience in Specific Disorders

ADVANCED DEMENTIA. An extensive literature has evolved over the past several years addressing the long term use of artificial enteral feeding in patients with advanced dementia, including advanced Alzheimer's dementia, a terminal disorder. Survival is the variable most often measured. Thomas Finucane reviewed fifteen studies quantifying mortality after feeding tube placement in patients with neurogenic (including dementia) and mixed disorders. Nearly all of these studies failed to identify a survival benefit afforded by feeding tube placement. Moreover, up to 50 percent of advanced dementia patients may die within a month of PEG placement.

Finucane also reviewed available evidence about other outcome parameters: prevention of aspiration pneumonia, prevention of the consequences of malnutrition, prevention or improvement of decubitus ulcers, prevention of other infections, improvement of functional status, and improvement of patient comfort. In this review of the literature from 1966 through March 1999, there were no reports documenting improvement in any of these outcomes with tube feeding.

TERMINAL CANCER. The role of nutritional support as an adjunct to managing cancer patients, not just those with incurable disease, has long been a subject of discussion and opinion. Ten years ago, a review of the status of nutritional support in cancer patients concluded that with the possible exception of bone marrow transplantation, no benefit had been documented for any outcome parameter, including survival. In 1997 Samuel Klein summarized a conference sponsored by the National Institutes of Health (NIH) and two nutrition societies, which concluded that at least short-term enteral or parenteral support does not decrease mortality or complications in cancer patients receiving cancer therapy; no good trials of long-term support were available to analyze. The conference further noted that while one might expect nutritional support to improve quality of life, no data existed that demonstrated this. Although no trials have specifically addressed terminal cancer patients there is consensus that artificial nutrition would not be beneficial.

CATASTROPHIC NEUROLOGICAL INJURY. Supplemental nutrition is commonly provided in patients in the neurological intensive care unit, be it patients with stroke or head trauma with brain injury. Most such patients have altered consciousness and are unable to eat. Some stroke patients will have dysphagia as a manifestation of neurological injury, although many will eventually recover swallowing function. In the initial assessment of these patients, outcome cannot always be defined. Moreover, in young patients with head trauma, for example, families cannot easily accept the prospect of death or at best, permanent loss of cognitive function requiring indefinite custodial care. It is thus reasonable to implement artificial nutritional support during the acute care of patients with severe neurological injury. With failure of recovery, however, the decisions regarding long-term support, including enteral tube feedings, must at some point be confronted. At the very least, any benefits and adverse effects of continued support become items of discussion.

Devastating neurological injury from trauma or nontraumatic etiology (e.g., hypoxic encephalopathy, extensive cerebral hemorrhage or infarction) are a common cause of permanent vegetative state (PVS) in which patients may exhibit wakefulness but otherwise have no detectable awareness. These patients have been particularly visible in the public eye because of the Karen Ann Quinlan and Nancy Cruzan cases in which the courts have also played a role.

There are no trials of enteral tube feedings in patients with PVS. This disorder is different from advanced dementia, and terminal cancer in which supplemental nutrition is considered as an adjunct to management in dying patients but does not affect outcome. In PVS, it is clearly life sustaining treatment: Brain injury, this devastating, is lethal and it is only with artificial provision of nutrition and fluids, and in some cases other supportive interventions, that these patients continue to live. The mechanics of providing nutrition differ little, however, and because feeding may be indefinite, PEG is the route most often chosen.

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