“My child has autism and has been diagnosed with a pediatric feeding disorder. His intake is becoming increasingly limited and he is beginning to lose weight despite interventions by an SLP and BCBA with expertise in this area. The doctor is recommending a g-tube. Is this a safe option? Will he be able to learn to eat without it?”

Answered by
Lindsay Bly, MS, CCC-SLP
Melmark

initiation and fading of gastrostomy tubesThe short answer: yes, there is a chance! Enteral nutrition, also known as tube feeding or gastrostomy tubes (commonly called “g-tubes”), is a way of delivering nutrition directly to the stomach or small intestine. There are many potential reasons for practitioners to recommend a feeding tube. Some examples include, but are not limited to malnutrition, food refusal, dysphagia, aspiration, bowel obstruction, gastroparesis, stroke, brain/spinal cord injuries, or diseases. Schreck et al. (2004) found individuals on the autism spectrum experience food selectivity, restricted food range, and overall have higher rates of food refusal than their neuro-typical peers. Kerwin et al. (2005) also reported increased presence of unusual eating behaviors such as food cravings and pica (i.e., eating inedible items) within the autism population.

According to a sample collected in 2017, there are approximately 189,036 pediatric patients and 248,846 adult patients with feeding tubes in the United States. Within this sample, of the total patients with feeding tubes, 57% of them are adults (Mundi et al., 2017).

Are feeding tubes really a solution? Yes, and no. Feeding tubes can prolong life, maintain weight, and may have the potential to be temporary. However, feeding tubes can increase discomfort, worsen outcomes, or result in earlier mortality (Johnston et al., 2008). For example, they may lead to infections or be difficult to fade.  According to Lee & MacPherson (2010), in a sample of 40 individuals with intellectual disability followed for 18 years, all experienced complications of percutaneous endoscopic gastrostomy (PEG) insertion, such as infection around the stoma site. In addition, all participants required frequent monitoring by medical professionals to maintain medical stability. During the review period, ten individuals died with pneumonia cited as cause of death.

Leslie and Coyle (2010) explain that clinical decisions must integrate best clinical judgment, patient values and expectations, and the best external evidence of a patient’s whole health status (not just dysphagia). We must carefully consider ethical imperatives governing health care practice, especially when a feeding tube is a possible intervention consideration. A risk benefit analysis is needed to assess the individual circumstance. Ultimately, this is a very complex decision involving the expertise of multiple disciplines, as well as stakeholders and the individual as appropriate and as possible.

If all other options have been exhausted (i.e., evidence-based feeding therapy with a speech pathologist, occupational therapist, or behavior analyst, consultation with a registered dietitian, and/or consultation with the primary care physician) and the team feels strongly that a feeding tube is necessary, then who is responsible for reviewing the feeding tube and/or NPO (nothing by mouth) status? If things weren’t muddy enough – there is no clear answer to this question. In this discussion, I will provide a roadmap on different routes forward, but unfortunately, there is not just one discipline responsible for the oversight of g-tubes. This contributes to prolonged feeding tube use. Now think back to the fact that 57% of individuals with feeding tubes are adults. Perhaps the fact that there is no assigned discipline to review feeding tubes is contributing to the extended use of feeding tubes that may have the potential to be temporary.

Identify The “Why”

The first step is to determine who suggested/recommended the feeding tube. This is important because it will help navigate the path forward. Specifically, it will assist in identifying the lead team members in the g-tube fading process. If you are unsure of the “why,” your primary care physician may be able to assist in creating a case history.

    • Aspiration/Dysphagia: Does the individual have a history of aspiration? Aspiration is defined as a condition in which food, liquids, saliva, or vomit is breathed into the airways. Essentially, food goes down the wrong way. When food goes into our lungs, it can grow bacteria that develops into pneumonia. Recurrent pneumonias would indicate an aspiration history. Individuals may also have a dysphagia diagnosis, which is the umbrella term for difficulty swallowing foods or liquids. Dysphagia is broadly estimated to affect 8% of the general population, or 590 million people worldwide (Cichero et al., 2017). If you are unsure if the individual has a history of aspiration or dysphagia, reaching out to the primary care physician may be a good place to start.Once an aspiration history has been established, the next step would be to seek a speech language pathologist (SLP). They will be able to provide consultation and guidance on the next steps. Most SLPs will recommend a video fluoroscopic swallow study (VFSS) before initiating treatment for feeding/swallowing issues. The results of the swallow study will help guide treatment. For some, the swallow study reveals that eating or drinking by mouth may not be possible.In some instances, aspiration may be present, and the team can still move forward with oral feeding. Ashford (2005) indicates there are three factors of aspiration:  1) health status; 2) swallowing safety; and 3) oral health status. Health status can be classified by the PCP – is the individual considered immunocompromised? Swallowing safety is determined by a video fluoroscopic swallow study completed by radiology and speech. Swallowing ability may be impaired indicating food/drink can enter the airway when swallowing – also known as aspiration. Oral health is determined by dental – does the individual have adequate oral hygiene and/or can they achieve adequate oral hygiene? The highest risk of illness/pneumonia from aspiration occurs only when all three factors are impaired (i.e., immunocompromised with decreased health status, noted aspiration during video fluoroscopic swallow study, decreased oral health).
    • Malnutrition: Malnutrition is defined as lack of proper nutrition, caused by not eating enough. There are different types of malnutrition with a variety of causes. Some experience malnutrition due to lack of appetite, vomiting, or increase in bowel movements. Medical conditions such as cancer, COPD, liver disease, and ulcerative colitis may inadvertently lead to malnutrition requiring a feeding tube. Other conditions such as dementia, depression, and schizophrenia can affect mood and appetite. Gastroenterological disorders such as Crohn’s disease can impede the ability to digest food which can lead to malnutrition despite eating.If an individual becomes malnourished from food refusals (i.e., declining to eat food presented to them), the next step would be to seek a qualified behavior analyst with feeding experience within their scope of expertise. When searching for professionals, be sure to include keywords or phrases such as “feeding” to yield the best results. Once in contact with a behavior analyst, they will assist in creating a plan. Again, they will likely request consultation from a team of professionals who have reviewed a video swallow study and conducted other assessments to rule out any medical concerns prior to initiating behavioral treatment.

Develop the Protocol

Now that we have reviewed how to identify why the feeding tube was placed (malnutrition vs. aspiration) and who the first contact will be, it’s time to advocate for a comprehensive protocol/plan. It is beneficial to have benchmarks and criteria to move forward. For instance, oral feeding may initially be presented with the speech language pathologist or behavior analyst exclusively. It is important to know when to transition oral feeding into the home environment and then hopefully into the daytime environment (program, work, etc.).

Identify Remaining Team Members

As this plan toward potential removal of the tube progresses forward, it is critical to consult with a registered dietitian. The dietitian will aid with formula weaning. As oral feeds progress forward, formula delivered via the g-tube should be decreased to ensure the individual feels hunger and maintains appropriate weight.

When the individual begins to consume all their calories and medications by mouth, the process of tube removal can be discussed more specifically. The gastroenterologist would be the first contact when you are ready to remove the tube. Some individuals will require additional support to close the tube feed hole, also known as the stoma. A good resource is a wound clinic to consult regarding stoma closure. A wound specialist can provide guidance on what is needed to ensure full closure.

Summary

Back to the original question, is it safe to consider a feeding tube? To reiterate, the short answer is “Yes, it can be a viable and successful treatment.” Initiating a process like this can seem overwhelming; however, if you follow along and have the right practitioners on your team, you can change your child’s life. Restarting eating by mouth can also be possible; feeding tubes can be successfully faded. Eating by mouth is such a deeply rooted social routine for most of us. Giving individuals the opportunity to participate in this pivotal routine certainly maximizes their quality of life. Advocating for this population often is not easy, but it is always worth it. Partnering with professionals equipped with these skills can lead to comprehensive assessment and an individualized plan to address all elements of selective feeding interventions, including the use of g-tubes and the reintroduction of eating by mouth again.

References:

Ashford, J. R. (2005). Pneumonia: Factors beyond aspiration. Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 14(1), 10-16. https://doi.org/10.1044/sasd14.1.10

Cichero, J. A., Lam, P., Steele, C. M., Hanson, B., Chen, J., Dantas, R. O., Duivestein, J., Kayashita, J., Lecko, C., Murray, J., Pillay, M., Riquelme, L., & Stanschus, S. (2017). Development of International Terminology and Definitions for Texture-Modified Foods and Thickened Fluids Used in Dysphagia Management: The IDDSI Framework. Dysphagia, 32(2), 293-314. https://doi.org/10.1007/s00455-016-9758-y

Johnston, S. D., Tham, T. C. K., & Mason, M. (2008). Death after PEG: Results of the National Confidential Enquiry into Patient Outcome and Death. Gastrointestinal Endoscopy, 68(2), 223-227. https://doi.org/10.1016/j.gie.2007.10.019

Kerwin, M. L. E., Eicher, P. S., & Gelsinger, J. (2005). Parental report of eating problems and gastrointestinal symptoms in children with pervasive developmental disorders. Children’s Health Care, 34(3), 217-234. https://doi.org/10.1207/s15326888chc3403_4

Lee, L., & MacPherson, M. (2010). Long-term percutaneous endoscopic gastrostomy feeding in young adults with multiple disabilities. Internal Medicine Journal, 40(6), 411–418. https://doi.org/10.1111/j.1445-5994.2009.02108.x

Leslie, P., & Coyle, J. (2010). Complex decisions involving gastrostomy feeding tubes: When you’re never right or wrong. Perspectives on Gerontology, 15(2), 42–47. https://doi.org/10.1044/gero15.2.42

Mundi, M. S., Pattinson, A., McMahon, M. T., Davidson, J., & Hurt, R. T. (2017). Prevalence of home parenteral and enteral nutrition in the United States. Nutrition in Clinical Practice, 32(6), 799-805. https://doi.org/10.1177/0884533617718472.

Schreck, K. A., Williams, K., & Smith, A. F. (2004). A comparison of eating behaviors between children with and without autism. Journal of Autism and Developmental Disorders, 34(4), 433-438. https://doi.org/10.1023/b:jadd.0000037419.78531.86

Citation for this article:

Bly, L. (2022). Clinical Corner: What are some considerations surrounding the initiation and fading of gastrostomy tubes? Science in Autism Treatment, 19(7).

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