As scary as the idea of a feeding tube may be, having one in place before it’s absolutely needed often improves quality of life.
By Melody Chavez
The word “feeding tube” may be intimidating for people with amyotrophic lateral sclerosis (ALS). Most people have heard about feeding tubes only through debates in the media, such as the one that raged during the Terri Schiavo case that climaxed in the spring of 2005. Others may see graduating to a feeding tube as “giving in” to this disease. Learning what choices you have regarding this issue, however, will help patients to be proactive in their care.
Tubes and Nutrition
A significant predictive factor for survival in ALS is maintaining good nutritional status. Despite one’s best efforts to maintain adequate nutrition and hydration, malnutrition can occur. The physical ability to prepare and eat food due to dysphagia (difficulty swallowing), poor pulmonary status, breathing diffi culty, chronic infections, and psychological distress all contribute to malnutrition.
Gastrostomy tubes, better known as “g-tubes,” are the most commonly-placed feeding tubes in people with ALS. A gastrostomy feeding tube is inserted through the skin and the stomach wall, directly into the stomach. Having a foreign body present in the stomach might sound unpleasant. This is a minor outpatient surgical procedure, however, which might not even require an overnight stay in the hospital.
A feeding tube should be introduced and discussed early after diagnosis to allow patients time to consider it before dysphagia reaches the serious stage. Some patients do not want to hear about this in the early stages. Becoming educated and knowing your options in your care is important. Difficult as it is to consider, discussion with your physician about the timing and placement of a g-tube is essential to your self-education.
Early Placement
Early placement of a g-tube, before it is absolutely necessary to improve impaired nutritional status, may provide patients with ALS the greatest benefit and least risk. The American Academy of Neurology’s current guidelines suggests g-tube placement be made before the forced vital capacity (the amount of air a patient can blow out of the lungs) of a patient falls to 50%. Patients who wait until their respiratory capacity falls below 50% of their predicted volume are at greater risk for developing respiratory complications from intubation.
Some people with ALS become very anxious during meal time or when taking their medications due to coughing or frightening choking episodes that develop as the disease progresses. The decision to have a feeding tube placed before this point is reached can help eating remain enjoyable. This will help patients eat only as much is comfortable and use the g-tube for supplemental feeding to maintain good nutrition. Knowing that this means of nutrition will not alter the ability to continue to eat can be helpful in calming fears of tube feeding and surgery. The tube can also be an excellent avenue to administer medication if pills become too hard to swallow.
The decision for a feeding tube placement is a very personal decision. Nutrition intervention is essential for a proactive, aggressive treatment plan for ALS. The patient’s wishes as well as the best clinical evidence, however, should drive your decision. The ultimate decision for a feeding tube should incorporate the patient’s and caregiver’s definition of quality of life.
Symptoms that warrant consideration for a G-tube placement:
- Dysphagia with coughing
- Choking during ingestion of food, fluid or medication
- Sialorrhea (drooling or excessive salivation)
- Fatigue with eating
- It takes too long to eat a meal and it’s not enjoyable any more
- Significant anxiety with eating that creates too much of a burden for the patient (sometimes the caretaker’s anxiety becomes the patient’s anxiety as well)
- Pills are too hard to swallow
- Respiratory status has been declining and the ALS team is concerned that delay in tube placement could make the procedure too risky in the future
- Unhealthy, unintentional weight loss that alters strength and is concerning to patient enough to intervene.
Reference
Procaccini, N.J., Nemergut, E.C. Percutaneous Endoscopic Gastrostomy in the Patient with Amyotrophic Lateral Sclerosis. Practical Gastroenerology, Series #60, 2008. p. 24-34.
Melody Chavez is a clinical dietitian from Tampa, Florida.
