Alternative Nutrition and Hydration in Dysphagia Care

Speech-language pathologists (SLPs) play an important role in assessing swallowing and swallowing disorders. This role requires familiarity with supplemental and alternative forms of nutrition and hydration (ANH). Decision making for ANH in dysphagia care typically involves interdisciplinary collaboration between members of the medical team, including the patient and their family. The role of the SLP is to make diet recommendations based on all available information (including recommendations to consider ANH) and to provide education about dysphagia.

Clinical Indications for Recommending ANH

Enteral feedings, such as those received through nasogastric (NG) tubes or percutaneous gastrostomy (PEG) tubes, are typically indicated for those patients who have a functional gastrointestinal tract but are unable to meet nutritional needs by mouth. Tube feeding may be considered when the patient has a swallowing impairment that precludes eating and impacts nutritional needs—provided that the gut is functional and that the patient can tolerate placement of the device (American Gastroenterological Association, 1995; Bischoff et. al, 2020; Ojo et al., 2019).

For the SLP, the clinical indication for recommending ANH is typically dysphagia (Hanna & Joel, 2005). This recommendation may be presented if the patient is unable to demonstrate the necessary physiologic function of the oral, oropharyngeal, pharyngeal, pharyngoesophageal, and/or esophageal phases to safely swallow despite modifications in food texture, liquid consistency, and posture/compensatory strategies. It is important to consider additional factors when recommending ANH, including

• medical status, diagnosis, and prognosis (e.g., acute vs. chronic, reversible vs. progressive);
• nutritional status (e.g., current status and intake and projected needs as determined by dietitian); and
• behavioral/cognitive status (including the ability to attend and participate in the meal process).

The physician is ultimately responsible for selecting which type of tube is used, but a brief description of several options is provided below.

• Gastrostomy tube (G-tube, e.g., PEG-tube)—inserted through the abdomen to provide non-oral nutrition. A percutaneous endoscopic gastrostomy tube, or PEG tube,is a common type of G-tube.
• Jejunostomy tube (J-tube e.g., PEJ-tube)—inserted through the abdomen and into the jejunum, the second part of the small intestine, to provide non-oral nutrition.
• Nasogastric tube (NG-tube)—inserted through the patient’s nose and passed through the esophagus to the stomach to provide non-oral nutrition. NG-tubes are often the preferred option for short-term use (over G-tubes or J-tubes). Tube size may vary and may influence swallow function.

The patient, with their proxy, then chooses to accept or reject use of alternative nutrition and hydration following a shared-decision-making, informed-consent discussion.

The following Chart (see Table 1) identifies key factors associated with ANH

Table 1: Parenteral and enteral alternative nutrition and hydration

Supplemental Feeding Options for Principal Nutrition via ANH

Supplemental feeding is often considered a “trial” as part of a dysphagia treatment plan, with a larger goal of increasing oral intake and reducing reliance on enteral nutrition. A patient whose dysphagia is resolving and/or improving should be carefully monitored for the amount and type of oral intake that they can safely tolerate. In collaboration with the patient’s physician, dietitian, and nursing staff, weaning from tube feeding may be considered given improvements in swallowing abilities while also considering the ability to maintain nutritional status, weight, and pulmonary health. Recommendations for supplemental feeding may include pleasure feeding. This option is often limited to the patient consuming tastes or small amounts of food types while following clear precautions; pleasure feeding is administered (or taken) to improve quality of life. Symptoms such as dry mouth may be present even when the body is adequately hydrated via ANH. In this situation, the discomfort associated with dry mouth may be relieved with ice chips, sips of water, lip moisteners, mouth moisturizers, and oral care.

ANH and Risk Reduction

Aspiration pneumonia is a pulmonary infection caused by aspiration of secretions, alone or together with food/liquid from the mouth or oropharynx that are colonized by pathogenic bacteria (Marik, 2001). Healthy individuals clear this material by coughing and by the body’s execution of normal immune functions (ciliary transport and cellular responses; Bustamante-Marin & Ostrowski, 2017); weak, immune-compromised, sedated patients and those with poor oral hygiene and/or other conditions (e.g., frailty) are more likely to develop aspiration pneumonia (Langmore et al., 1998; Marik, 2001; Bock et al., 2017). Aspiration pneumonitis is a chemical irritation to the lungs caused by the retrograde aspiration of gastric contents or by anterograde (from the mouth) aspiration of highly acidic foods and/or liquids that overwhelm the lungs’ acid-buffering capabilities (Marik, 2001). The use of ANH may reduce aspiration of food and liquid into the airway; however, individuals with dysphagia who receive ANH remain at risk for aspiration (Langmore et al., 2002).

Similarly, patients with dysphagia may aspirate gastric reflux or vomit. A given individual’s risk for aspiration pneumonia or pneumonitis may be reduced by augmenting ANH with oral hygiene care as well as medical and positioning approaches to reduce gastric reflux and vomiting (Metheny et al., 2010; Terpenning, 2005).

Malnutrition and dehydration are influenced by the amount of food and liquid intake as well as by the body’s ability to digest and use the food and liquid consumed. If the gastrointestinal tract is functional, or if the individual is able to tolerate total parenteral nutrition (see TPN in Appendix Glossary), intravenous (IV) hydration, or hypodermal clysis hydration, then adequate nutrition and hydration may be maintained via ANH (Finestone et al., 1995). Some disease processes (e.g., cancers and immune disorders) may reduce the patient’s ability to benefit from nutrition and hydration. In these cases, even ANH is unlikely to contribute to the patient’s overall well-being.

Patient Factors and Recommendations for ANH

Nonclinical and ethical factors may be included in the decision-making process when patients and/or families are considering ANH (Druml et al., 2016). The patient’s wishes (autonomy), cultural beliefs/ethnicity, and religion are among a few of the nonclinical factors cited in the literature as being influential in the decision-making process (Braun et al., 2005; Cavalieri, 2001; Cervo et al., 2006; Duffy et al., 2006; Moynihan et al., 2005; Searight & Gafford, 2005; Smith & Andrews, 2000). Each nonclinical factor may carry varying degrees of influence in the decision for different individuals. Individuals might not share all aspects of the belief system of the ethnic or religious group with which they identify, so consider each of these nonclinical factors (e.g., autonomy, ethnicity/cultural beliefs, religion) on an individual basis. See ASHA’s Practice Portal page on Cultural Responsiveness.

Autonomy

Patient autonomy, or the right to self-determination, is a key factor in health care decision-making. Underlying the principle of autonomy is the presumption that individuals participate and make decisions based on an understanding of the situation, independent of controlling influences. Multiple variables can make this principle complex in the case where ANH is considered. Those who require ANH may be cognitively impaired or unable to make the decision to initiate or forego such treatment at the time in which it is needed. Often, surrogates are placed in situations where they are required to decide whether to initiate or forego ANH. Although an increased awareness of the importance of advanced directives has prompted patients to express their wishes ahead of time regarding issues like ANH, the overall use of advanced directives—and the ability to make an informed, accurate interpretation of the patient’s wishes—can be difficult (Mueller et al., 2004; Searight & Gafford, 2005). Furthermore, because the provision of food and liquid is symbolic of love and nurturing (Smith & Andrews, 2000), decisions can be made based on an emotional context—for example, “if heath care providers do not administer ANH, they are starving the patient to death.” Regardless of whether the decision maker is the patient or the surrogate, that decision maker must understand the benefits and risks associated with ANH—specifically as related to the diagnosis. The nonclinical factors discussed above are not uniform across ethnic and religious groups. Furthermore, the patient’s decision-making capacity is not always clear-cut—and many times, families do not agree on the issue of ANH. Involvement of a dedicated palliative care team can help establish goals of care. A bioethics committee can also assist with formulating medical/clinical policy, educating hospital staff and the community on topics (e.g., advanced directives and health care proxies), and providing families, physicians, and nurses with consultations on ethical dilemmas, which occasionally involve ANH.

Ethnicity or Cultural Beliefs

Ethnicity or cultural beliefs can play a large role in decisions regarding ANH. Autonomy is a basic principle embedded in health care in the United States, but different cultures use family-based, physician-based, or shared-family-physician-based decision making (Searight & Gafford, 2005). Many cultures place beneficence and nonmaleficence (see Appendix Glossary) above autonomy when dealing with health care issues and think that placing difficult decisions on the individual alone regarding medical management is disrespectful to the patient and the family unit. Other cultures feel that the physician is the most qualified person to make medical decisions and place the bulk of the decision making in the hands of the physician.

Religion

Religion can also greatly influence decisions regarding ANH. Although many people view ANH as medical treatment, many religions view it as basic care that should not be denied (Gordon & Alibhai, 2004). The sanctity of life is a powerful principle—one to which many individuals, groups, and organized religions ascribe (Smith & Andrews, 2000) and equate provision of ANH with receiving food and liquid by mouth (Gordon & Alibhai, 2004). However, many individuals agree that withholding or withdrawing ANH is permissible if the burdens and risks clearly outweigh the benefits (Smith & Andrews, 2000).

Outcomes Associated With PEG-Tubes

Published data regarding specific outcomes associated with PEG-tube feeding are limited and varied. Frequently reported outcomes may include

• survival rates,
• specific nutrition and hydration goals,
• prevention of aspiration,
• general recovery,
• recovery of swallowing and per os (PO) status,
• complications, and
• quality of life.

Weaning from enteral nutrition may be considered by the medical team, given progress toward safe oral intake and ability to maintain nutritional goals. For patients with severe and intractable dysphagia, long-term tube placement may be considered to maintain nutritional needs.

Stroke

In patients with poststroke dysphagia, early placement of a PEG-tube may be needed if the prognosis for return to or replacement of oral feeding extends beyond the initial weeks. NG-tube placement may suffice to supplement oral feeding if a shorter duration of dysphagia is expected. However, NG-tubes do not eliminate risk of aspiration (Dziewas et al., 2004). Early placement of a PEG may assist in overall recovery, may allow graded assessment and intervention, and ultimately may lead to less time needed for tube-feeding. However, early placement is also associated with lower survival rates. The most common complication reported was aspiration pneumonia regardless of nil per os (NPO) status, followed by PEG-tube site infection and tube blockage (Janes et al., 2005).

Head and Neck Cancer

In patients with head and neck cancer, PEG-tubes are commonly placed at the outset of treatment (surgical and/or chemotherapy/radiation) in anticipation of swallowing difficulties severe enough to prevent adequate nutrition and increased risk of aspiration (Selz & Santos, 1995). Specific outcomes regarding length of tube placement depend on numerous factors, including severity of dysphagia, treatment toxicity, disease stage/control, and complications (e.g., abscess and metastasis to abdominal wall and/or PEG-tube site) from tube placement (Cruz et al., 2005).

Dementia

Currently available research and clinical guidance (e.g., from the National Institute for Health and Care Excellence [NICE] and the European Society of Parenteral and Enteral Nutrition [ESPEN]) suggest that enteral nutrition is a reasonable option for management in patients with mild or moderate dementia if malnutrition is primarily caused by a reversible condition (e.g., depression, infection, pain, poor oral health) and only for a limited time (NICE, 2018; Volkert et al., 2015). It is discouraged in those with advanced dementia. Enteral nutrition in those with dementia has not been found to positively impact survivability, infection prevention, or quality of life (Finucane et al., 1999; Garrow et al., 2007; Sampson et al., 2009). The impact of enteral nutrition on prevention of aspiration pneumonia is inconclusive (see Orlandoni et al., 2020, for a more complete discussion of recent evidence). Restricted communication abilities characteristic of dementia may make it further difficult to determine the effect of interventions such as PEG-tube placement on quality of life.

Poor Outcomes With PEG-Tubes

Several studies have identified various risk factors and diagnostic categories associated with poor outcomes, including death, following placement of a feeding tube (Janes et al., 2005; Lang et al., 2004; Plonk, 2005). Factors that may influence outcomes include, but are not limited to, age > 75 years, advanced cancer, Charlson score > 3, low body mass index, albumin < 3g per deciliter (g/dl), hospitalization, and NPO × 7 days (see Appendix Glossary for a definition of Charlson score). Although each factor, in and of itself, may not represent a poor prognostic indicator, any number or combination of these factors may make the benefit of PEG-tube placement suspect (Plonk, 2005). Diagnoses that include advanced dementia, anorexia–cachexia syndrome (see Appendix Glossary), and advanced cancer have all been cited in studies as conditions that do not receive the intended benefit of PEG-tube placement (Angus & Burakoff, 2003; DeLegge et al., 2005; Finucane & Bynum, 1996; Gillick, 2000; McMahon et al., 2005; Moynihan et al., 2005).

References

American Gastroenterological Association. (1995). American Gastroenterological Association medical position statement: Guidelines for the use of enteral nutrition. https://www.gastrojournal.org/article/0016-5085(95)90230-9/fulltext

Angus, F., & Burakoff, R. (2003). The percutaneous endoscopic gastrostomy tube: Medical and ethical issues in placement. American Journal of Gastroenterology, 98(2), 272–277. https://doi.org/10.1111/j.1572-0241.2003.07267.x

Bischoff, S. C., Austin, P., Boeykens, K., Chourdakis, M., Cuerda, C., Jonkers-Schuitema, C., Lichota, M., Nyulasi, I., Schneider, S. M., Stanga, Z., & Pironi, L. (2020). ESPEN guideline on home enteral nutrition. Clinical Nutrition, 39(1), 5–22. https://doi.org/10.1016/j.clnu.2019.04.022

Bock, J. M., Varadarajan, V., Brawley, M. C., & Blumin, J. H. (2017). Evaluation of the natural history of patients who aspirate. The Laryngoscope, 127(Suppl. 8), S1–S10. https://doi.org/10.1002/lary.26854

Braun, U. K., Rabeneck, L., McCullough, L. B., Urbauer, D. L., Wray, N. P., Lairson, D. R., &Beyth, R. J. (2005). Decreasing use of percutaneous endoscopic gastrostomy tube feeding for veterans with dementia: Racial differences remain. Journal of the American Geriatrics Society, 53(2), 242–248. https://doi.org/10.1111/j.1532-5415.2005.53109.x

Bustamante-Marin, X. M., & Ostrowski, L. E. (2017). Cilia and mucociliary clearance. Cold Spring Harbor Perspectives in Biology, 9(4), Article a028241. https://doi.org/10.1101/cshperspect.a028241

Cavalieri, T. A. (2001). Ethical issues at the end of life. The Journal of the American Osteopathic Association, 101(10), 616–622.

Cervo, F. A., Bryan, L., & Farber, S. (2006). To PEG or not to PEG: A review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics,61(6), 30–35.

Cruz, I., Memel, J. J., Brady, P. G., & Cass-Garcia, M. (2005). Incidence of abdominal wall metastasis complicating PEG tube placement in untreated head and neck cancer. Gastrointestinal Endoscopy, 62(5), 708–711. https://doi.org/10.1016/j.gie.2005.06.041

DeLegge, M. H., McClave, S. A., DiSario, J. A., Baskin, W. N., Brown, R. D., Fang, J. C., Ginsberg, G. G., & ASGE Task Force on Enteral Nutrition. (2005). Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy. Gastrointestinal Endoscopy, 62(6), 952–959. https://doi.org/10.1016/j.gie.2005.08.024

Druml, C., Ballmer, P. E., Druml, W., Oehmichen, F., Shenkin, A., Singer, P., Soeters, P., Weimann, A., & Bischoff, S. C. (2016). ESPEN guideline on ethical aspects of artificial nutrition and hydration. Clinical Nutrition, 35(3), 545–556. https://doi.org/10.1016/j.clnu.2016.02.006

Duffy, S. A., Jackson, F. C., Schim, S. M., Ronis, D. L., & Fowler, K. E. (2006). Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Journal of the American Geriatrics Society, 54(1), 150–157. https://doi.org/10.1111/j.1532-5415.2005.00526.x

Dziewas, R., Ritter, M., Schilling, M., Konrad, C., Oelenberg, S., Nabavi, D. G., Stögbauer, F., Ringelstein, E. B., & Lüdemann, P. (2004). Pneumonia in acute stroke patients fed by nasogastric tube. Journal of Neurology, Neurosurgery & Psychiatry, 75(6), 852–856. https://doi.org/10.1136/jnnp.2003.019075

Finestone, H. M., Greene-Finestone, L. S., Wilson, E. S., & Teasell, R. W. (1995). Malnutrition in stroke patients on the rehabilitation service and at follow-up: Prevalence and predictors. Archives of Physical Medicine and Rehabilitation, 76(4), 310–316. https://doi.org/10.1016/s0003-9993(95)80655-5

Finucane, T. E., & Bynum, J. P. W. (1996, November 23). Use of tube feeding to prevent aspiration pneumonia. Lancet, 348(9039), 1421–1424. https://doi.org/10.1016/s0140-6736(96)03369-7

Finucane, T. E., Christmas, C., & Travis, K. (1999, October 13). Tube feeding in patients with advanced dementia: A review of the evidence. JAMA, 282(14), 1365–1370. https://doi.org/10.1001/jama.282.14.1365

Garrow, D., Pride, P., Moran, W., Zapka, J., Amella, E., & Delegge, M. (2007). Feeding alternatives in patients with dementia: Examining the evidence. Clinical Gastroenterology and Hepatology, 5(12), 1372–1378. https://doi.org/10.1016/j.cgh.2007.09.014

Gillick, M. R. (2000, Jan 20). Rethinking the role of tube feeding in patients with advanced dementia. The New England Journal of Medicine, 342(3), 206–210. https://doi.org/10.1056/nejm200001203420312

Gordon, M., & Alibhai, S. H. H. (2004). Ethics of PEG tubes: Jewish and Islamic perspectives. The American Journal of Gastroenterology, 99(6), 1194. https://journals.lww.com/ajg/Citation/2004/06000/Ethics_of_PEG_Tubes_Jewish_and_Islamic.38.aspx

Hanna, E., & Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. Perspectives on Swallowing and Swallowing Disorders, 14(3), 13–18. https://doi.org/10.1044/sasd14.3.13

Janes, S. E., Price, C. S., & Kahn, S. (2005). Percutaneous endoscopic gastrostomy: 30-day mortality trends and risk factors. Journal of Postgraduate Medicine, 51(1), 23–29.

Lang, A., Bardan, E., Chowers, Y., Sakhnini, E., Fidder, H. H., Bar-Meir, S., & Avidan, B. (2004). Risk factors for mortality in patients undergoing percutaneous endoscopic gastrostomy. Endoscopy, 36(6), 522–526. https://doi.org/10.1055/s-2004-814400

Langmore, S. E., Skarupski, K. A., Park, P. S., & Fries, B. E. (2002). Predictors of aspiration pneumonia in nursing home residents. Dysphagia, 17(4), 298–307. https://doi.org/10.1007/s00455-002-0072-5

Langmore, S. E., Terpenning, M. S., Schork, A., Chen, Y., Murray, J. T., Lopatin, D., & Loesche, W. J. (1998). Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia, 13(2), 69–81. https://doi.org/10.1007/PL00009559

Marik, P. E. (2001). Aspiration pneumonitis and aspiration pneumonia. The New England Journal of Medicine, 344(9), 665–671. https://doi.org/10.1056/NEJM200103013440908

McMahon, M. M., Hurley, D. L., Kamath, P. S., & Mueller, P. S. (2005). Medical and ethical aspects of long-term enteral tube feeding. Mayo Clinic Proceedings, 80(11), 1461–1476. https://doi.org/10.4065/80.11.1461

Metheny, N. A., Davis-Jackson, J., & Stewart, B. J. (2010). Effectiveness of an aspiration risk-reduction protocol. Nursing Research, 59(1), 18–25. https://doi.org/10.1097/nnr.0b013e3181c3ba05

Moynihan, T., Kelly, D. G., & Fisch, M. J. (2005, September 1). To feed or not to feed: Is that the right question? Journal of Clinical Oncology, 23(25), 6256–6259. https://doi.org/10.1200/JCO.2005.04.019

Mueller, P. S., Hook, C. C., & Fleming, K. C. (2004). Ethical issues in geriatrics: A guide for clinicians. Mayo Clinic Proceedings, 79(4), 554–562. https://doi.org/10.4065/79.4.554

National Institute for Health and Care Excellence (NICE). (2018, 20 June). Dementia: Assessment, management and support for people living with dementia and their carers [NICE Guideline 97]. https://www.nice.org.uk/guidance/ng97

Ojo, O., Keaveney, E., Wang X.-H., & Feng, P. (2019). The effect of enteral tube feeding on patients’ health-related quality of life: A systematic review. Nutrients, 11(5), Article 1046. https://doi.org/10.3390/nu11051046

Orlandoni, P., Jukic Peladic, N., & Cherubini, A. (2020). Enteral nutrition in advanced dementia: An unresolved dilemma in clinical practice. European Geriatric Medicine, 11(2), 191–194. https://doi.org/10.1007/s41999-020-00292-4

Plonk, W. M. (2005). To PEG or not to PEG. Practical Gastroenterology, 29(7), 16, 19–21, 25–26, 31.

Sampson, E. L., Candy, B., & Jones, L. (2009). Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD007209.pub2

Searight, H. R., & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515–522.

Selz, P. A., & Santos, P. M. (1995). Percutaneous endoscopic gastrostomy: A useful tool for the otolaryngologist–head and neck surgeon. Archives of Otolaryngology–Head & Neck Surgery, 121(11), 1249–1252. https://doi.org/10.1001/archotol.1995.01890110027005

Smith, S. A., & Andrews, M. (2000). Artificial nutrition and hydration at the end of life. Medsurg Nursing, 9(5), 233–244.

Terpenning, M. (2005). Geriatric oral health and pneumonia risk. Clinical Infectious Diseases, 40(12), 1807–1810. https://doi.org/10.1086/430603

Volkert, D., Chourdakis, M., Faxen-Irving, G., Frühwald, T., Landi, F., Suominen, M. H., Vandewoude, M., Wirth, R., & Schneider, S. M. (2015). ESPEN guidelines on nutrition in dementia. Clinical Nutrition, 34(6), 1052–1073. https://doi.org/10.1016/j.clnu.2015.09.004.

Appendix

Alternative Nutrition and Hydration Glossary

albumin: A major protein found in the blood; low albumin levels can be indicative of poor nutritional status.

anorexia–cachexia syndrome (CACS): Weight loss and muscle wasting due to poor oral intake and metabolic changes. CACS is an effect of cancer, related to malignancy.

apiration pneumonia: A pulmonary infection caused by aspiration of secretions by themselves or with food and or liquid that are colonized by bacteria

aspiration pneumonitis: An irritation to the lungs caused by retrograde aspiration of gastric contents or by anterograde aspiration of acidic foods and/or liquids

autonomy: The right to self-determination; the right of patients to make decisions, or participate in making decisions, about their care.

beneficence: The clinician’s duty to act for the benefit of others.

body mass index (BMI): A measure of body fat based on height and weight (scores under 18.5 are considered underweight).

bolus feeds: A bolus feed is given through a feeding tube at a set time of day via a syringe connected to a feeding tube. A gravity feed uses a container and tubing that enable the rate to be better controlled and slower.

Charlson score: A score that is based on the number and severity of comorbidities and that is predictive of 1-year mortality. This score is based on the Charlson Comorbidity Index.

enteral: Within or by way of the intestine or gastrointestinal tract.

hypodermal clysis hydration: The introduction of fluid into the body by subcutaneous injection to replace fluids that have been lost through vomiting, sweating, or diarrhea.

intravenous (IV): Administration of nutrients through a vein.

nasogastric tube (NG-tube): A feeding tube that is inserted through the nose, down the esophagus, and into the stomach.

nonmaleficence: The clinician’s duty to not inflict harm.

nil per os (NPO): Nothing by mouth.

percutaneous endoscopic gastrostomy tube (PEG-tube): A tube inserted into the stomach through a small abdominal incision in the abdominal wall to provide food or other nutrients.

percutaneous endoscopic jejunostomy (PEJ-tube): A feeding tube inserted directly through the skin into the middle part of the small bowel (the jejunum).

stationary pump or portable pump: A machine that controls the amount of formula going into the feeding tube.

total parenteral nutrition (TPN): A method of providing nutrition through intravenous (IV) infusion for those who are unable to absorb nutrients via the intestines. Can contain carbohydrates, protein, fats, and electrolytes. The formula is determined based on individual needs.