Feeding tubes: whose decision?

Is it all right to allow people to die? As the holidays approach, this is an especially appropriate question because it is the time, statistically, when many elderly people die.

A well-known person in our area was injured in an automobile accident more than three years ago and has since been in a nursing facility in a "vegetative state." From all news accounts, his wife has endeavored to learn all she could about his type of injury. She has now decided to remove life support, a move she says is what her husband would have wanted. The governor of the state where they reside has tried to block her request, and several people who do not know the couple involved or their circumstances have voiced outrage at her request. A judge overruled the governor. At this writing, another judge has now overruled the first judge.

Is this something that should be fought out in the courts and the news media, or should it be resolved between the family and the physician? What is your role as a DON if this type of event occurs in your facility? In this situation the tube was most likely inserted in the hospital before he was admitted to long-term care, but what about the residents who are in your facility who are now eating by mouth?

Do the decision makers involved with nursing facilities routinely request an order for a feeding tube if a resident simply stops eating or no longer consumes enough to sustain life? How often have we all seen patients who are difficult to feed end up with a feeding tube - for the convenience of the staff? Obviously this is not a decision to be made simply because the CNAs report that the person will not eat. It can only be made after you personally have tried to feed the resident on several occasions and at different times of the day, after that special someone in your facility who "can get anyone to eat" has tried, and after therapy has evaluated the resident.

The family should be made to understand the possible future implications of this action. They will be operating with emotions, not logic. We have no right to impose our opinions on the family, and should only be compassionate and provide them with the necessary resources to make these difficult decisions. But - do you know of nurses and doctors who have flippantly said, "You can't just let them starve"?

Hospice is an invaluable source of help and advice. It teaches that it is inhumane to put food into a gut that is trying to shut down peacefully and die. We must remember that from the moment of conception we are heading toward death. While it would be monstrously wrong and criminal to speed that process, it is equally wrong and monstrous not to allow a human being to die with dignity.

How often do people with feeding tubes come back from surgery confused, pulling at their tubes and requiring that their hands be restrained in some way? Have we really improved the quality of their lives? How many of them die within a few weeks anyway? Isn't that death made more uncomfortable by the existence of food and fluids in their bodies; e.g., do their lungs fill until they "drown" in respiratory distress - not a pretty or peaceful way to go.

Meanwhile, those residents in our facilities who do have feeding tubes present us with specific management challenges. This is because they are usually immobile; they require extra effort to make sure they receive enough socialization and physical exercise. Even though they should take in enough calories, protein and carbohydrates to somewhat protect their skin, without adequate daily passive stretching of each joint and a continual turning and repositioning schedule to constantly change the areas receiving pressure, and unless they are kept clean and dry with adequate air flow to the skin, and unless we position them correctly and up in a chair as much as possible (preferably with weight bearing), they will sustain the injuries of immobility contractures - which are totally preventable - and bed sores.

In protecting residents from ever reaching this stage, the staffs of nursing facilities, especially DONs, often have more power than they realize - power to influence, power to help, power to hurt. Before we make statements or offer advice about end-of-life decisions, we should imagine ourselves or our loved ones in this condition. Would you, or they, want to "exist" in a vegetative state? Would you, or they, want caregivers to be required to maintain this?

Karen L. Bonn, RN, ROF, a former Director of Nursing, is founder and president of Restorative Medical, Inc., Brandenburg, KY.