Life and death decisions are tremendously stressful for families. One such dilemma is choosing or refusing an artificial tube for feeding an individual who develops dysphagia, an inability to swallow, or who refuses anything by mouth. Dysphagia and failure to eat frequently develops in the end stages of Alzheimer’s patients. In the absence of a living will or the patient’s ability to express his or her wishes, the family must wrestle with these choices.

Nevertheless, the choice to have the surgical insertion of a feeding tube is not a final one. Numerous lifestyle changes and care issues follow. That’s the part many families overlook, or underestimate. For instance, the physician may reassure the family that the patient will tolerate the procedure well, resulting in a prolonged life. The bigger picture for families includes these issues:

  • Who will care for the patient after the hospital discharge?
  • If the patient comes back to a home setting, who is trained and willing to administer the tube feeding?
  • How often are the tube feedings?
  • If the patient goes into a facility, what type will be appropriate?

A common misconception among families is that feeding tubes are low maintenance. The reality of caring for a patient with a tube feeding tube includes the following:

  • Feedings can be as often as every 2—4 hours, continuously day and night, for as long as the patient lives.
  • Feeding tubes clog up without proper flushing. Irrigation may be as frequent as before and after each feeding and on-going.
  • Feeding tubes wear out, malfunction, or cause infections at the site. Repetitive surgery in a hospital is needed to replace them. This may happen more than once per year.
  • Confused and agitated patients have been known to pull out a feeding tube.
  • The only home health care professional that is authorized to provide tube feedings is a skilled nurse.
  • The only long-term facility that can administer tube feedings is a nursing home.