End-of-Life Nutrition: Is Tube Feeding the Solution?
One complex decision regarding nutrition care that many patients, families, and healthcare professionals struggle with is whether to use percutaneous endoscopic gastrostomy (PEG) tube feeding in elderly or terminally ill residents who are losing weight, not eating well, or both. Although the evidence shows tube feeding generally does not prolong or improve quality of life for patients who are terminal or have advanced dementia, healthcare professionals do not always understand the risks of tube feeding in this population well enough to determine whether the risks outweigh the benefits. Before healthcare professionals recommend tube feeding, they should review the evidence regarding its safety and efficacy with the patient, if possible, and his or her surrogate(s).
Key words: tube feeding, hospice care, end-of-life care
In the final days and weeks of life, many patients reduce food and fluid intake, resulting in weight loss or cachexia. These physical changes may upset and puzzle family members, who misperceive end-of-life anorexia as the cause of death rather than as part of the dying process. Some patients and family members, in consultation with those healthcare professionals who believe that ensuring proper intake of nutrients and fluids is essential at all stages of life (even at the expense of comfort and quality of life), may consider percutaneous endoscopic gastrostomy (PEG) tube feeding. The evidence suggests administering nutrients neither prolongs nor improves life for many elderly patients with anorexia-related malnutrition at the end of life,1 and weight loss and cachexia frequently persist despite intervention.2 Thus, many registered dietitians (RDs) consider the phrase end-of-life nutrition care an oxymoron.
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ll healthcare professionals in long-term care should understand the current evidence-based recommendations for end-of-life nutrition care. It is imperative that they provide patients, families, and surrogates with accurate information regarding the risks and benefits of PEG tube feeding and other means of artificial nutrition and hydration (ANH) for patients approaching the end of life.
Tube Feeding at the End of Life
The most common medical intervention for providing ANH is a PEG tube,3 which is inserted through the stomach or intestine via a minor surgical procedure. PEG tubes have been used for several decades4 to deliver nutrients (ie, feeding formula), fluids, and even medications to individuals who cannot or will not eat or drink enough to maintain their nutrition status or stay hydrated. With correct use, PEG tubes can provide 100% of a patient’s nutritional needs.
Although PEG tube placement is considered relatively safe, 8% to 30% of patients experience complications.5 In addition to the usual risks associated with surgery in people who are elderly or unwell, perforation and other organ injuries during the procedure are possible.6 As many as one-third of patients who receive a PEG tube develop an infection at the surgical site,5,7 and 1% to 2% have leakage of gastric contents or formula.6 Postsurgical infection is significantly more common in patients with malignancy.7 Patients who are confused or who experience discomfort may pull on the tube, which can result in the use of hand restraints or hospital admission to replace the tube. Other risks include intolerance of the feeding formulas used and electrolyte imbalances.
Several organizations and authors have published practice guidelines for PEG tube placement over the years.1,4-6,8,9 The general recommendation is that PEG be used for only four conditions: head and neck cancer, acute stroke with dysphagia, neuromuscular dystrophy syndromes, and gastric decompression.4
The experts largely agree that PEG tube feeding is of little benefit for most patients with a limited life span or with dementia.1,2,5,9-11 In patients with dementia, PEG tube feeding rarely contributes to better nutritional status or longer life, nor does it minimize suffering or improve functional status.1 PEG tube feeding does not help prevent skin breakdown or pressure ulcers despite greater protein intake,2 and it increases rather than decreases the risk of aspiration in patients with dementia-related dysphagia.8 Tube feeding is therefore not recommended for patients with advanced dementia.2,6,10 In patients with other chronic illnesses, such as cancer or neuromuscular disease, studies have found that PEG tube feeding does not improve mortality.4
Despite the lack of evidence showing a benefit from PEG tube feeding, many patients with a terminal illness or advanced dementia have a PEG tube in place on admission to a skilled nursing facility or receive a PEG tube during hospitalization for an acute illness. A recent study by Mendiratta and colleagues12 found that PEG tube placement in elderly patients increased 38% between 1993 and 2003. During the time analyzed, placements occurred in approximately 1 in 10 patients with dementia and they almost doubled in patients with Alzheimer’s-type dementia.12 It is difficult to determine the exact proportion of nursing home residents with dementia who have PEG tubes inserted, but estimates range from 5.4% to 34%.11,13
Patients with dysphagia secondary to conditions other than stroke are sometimes given PEG tubes under the mistaken belief that it will reduce the risk of aspiration.4 Data show PEG tube feeding actually increases the risk of aspiration and aspiration pneumonia.14 Clinically significant aspiration pneumonia is estimated to occur in 5% of patients who receive gastric feedings.15 A survey of speech and language pathologists found that only 22% were aware that tube feeding was unlikely to reduce the risk of aspiration in advanced dementia patients with dysphagia.16 Part of the increased risk of aspiration may be attributable to a decline in renal function at the end of life, which increases pulmonary and oral secretions, contributing to choking; contributes to pulmonary edema, leading to dyspnea; and causes ascites, resulting in abdominal discomfort.8
Forgoing Artificial Nutrition and Hydration at the End of Life
The evidence suggests that withholding ANH is neither painful nor uncomfortable. People adapt physiologically to starvation, and studies show that dying patients who stop eating and drinking rarely experience discomfort due to hunger.17 Dehydration usually precedes starvation, causing hemoconcentration and hyperosmolality followed by azotemia, hypernatremia, and hypercalcemia.17 These metabolic changes are thought to have a sedating effect on the brain prior to death, and some think dehydration may increase comfort and minimize pain during the dying process. Withholding or minimizing hydration in the final days of life can also have desirable effects, including a reduction in oral and bronchial secretions, a decreased need to urinate, and less pulmonary congestion and associated coughing.17 Ice chips, moistened swabs, and proper mouth care can help manage dry mouth in dehydrated patients. Patients who are no longer eating or drinking may exhibit confusion, delirium, and diminished alertness, but these effects are typically associated with the active dying process and can occur with any progressive illness regardless of food and fluid consumption.8
For patients nearing death who show interest in eating, most experts suggest hand feeding over tube feeding. Although hand feeding is unlikely to satisfy 100% of a patient’s nutrition and fluid needs, it addresses important basic needs that help preserve quality of life. For example, many enjoy the routine of sharing a meal with others and the flavors and textures of food.
Patients at the end of life should be encouraged to eat foods that bring them comfort or are associated with pleasure or good memories. The consistency of food and fluids may need to be adjusted to make consumption easier for patients with swallowing problems. Texture modifications, thickened liquids, and specialized feeding techniques can help reduce the risk of aspiration.
Why Are PEG Tubes Recommended Despite the Evidence Against Their Use?
Treatment decisions about end-of-life nutrition are difficult and rarely based on evidence alone. Many considerations factor into the decisions families and providers make about enteral feeding, including provisions in advance directives or living wills; cultural, religious, and ethical beliefs; legal and financial concerns; and emotions.
Some providers, patients, and family members view withholding tube feeding as actively starving the patient and feel ethically or morally obligated to insert a PEG tube. Others surmise ANH may have benefits at the end of life, even though the evidence thus far has failed to show any.10 Family physicians or endoscopists who recommend PEG may be focused solely on the technicalities of the procedure and neglect to consider complex factors such as the patient’s age, prognosis, and clinical condition.18 Some patients and families may not know their preferences regarding ANH or may be emotionally unable to participate in discussions on the subject.
Ideally, facilities should obtain advance directives regarding end-of-life nutrition care before such decisions have to be made and then revisit the conversation as the end of life approaches. The Figure provides an example of an advance directive regarding life-sustaining measures, which can be included in the patient’s medical record and reviewed periodically.
It is also critical that the interdisciplinary team (IDT) at a skilled nursing facility initiate conversations about ANH with patients and their families when the situation is more conducive to basing decisions on information, rather than emotion. Evidence about the risks and benefits of PEG tube placement, including any specific to a patient’s circumstances, should be clearly outlined in the conversation.
It is important for healthcare professionals to respect the end-of-life decisions the patient and his or her surrogate or family makes, even if those decisions are in conflict with the IDT’s recommendations. If patients or their surrogates request a PEG tube be placed against the advice of the IDT and the physician feels doing so is not in a patient’s best interest, the physician should suggest they seek another medical provider willing to recommend PEG tube placement.8
A Regulatory Perspective
Out of necessity, practitioners in the skilled nursing environment are concerned with how the Centers for Medicare & Medicaid Services (CMS) will view end-of-life nutrition plans for residents. According to CMS’s State Operations Manual, all care and services provided for nutrition and hydration, including comfort measures, should be based on the resident’s choices and the results of a pertinent nutritional assessment.19 CMS acknowledges that when end-of-life care is provided according to an individualized care plan that gives priority to the resident’s choices, residents with terminal conditions may fail to meet acceptable parameters of nutritional status.19 As long as a facility has documentation that the plan of care was discussed with the resident or his or her family or surrogate and that it complies with their wishes, CMS is not likely to question the use of hand feeding rather than tube feeding for a terminally ill resident.
In 2011, the Pioneer Network published The New Dining Practice Standards, a comprehensive document that makes recommendations for nutrition care in skilled nursing facilities.20 CMS was involved in developing the standards and encourages facilities to adopt their recommendations. The New Dining Practice Standards state that when oral feeding strategies for terminally ill patients fail, tube feeding should not automatically be pursued. The standards encourage facilities to base decisions about tube feeding on discussions with the relevant party (the patient or patient’s surrogate), ensuring that decisions are aligned with the patient’s informed choices, goals, and preferences, rather than basing decisions on the patient’s diagnosis.20
Conclusion
Healthcare professionals, patients, and families should recognize that PEG tube placement is not a risk-free medical intervention and understand the burdens it may impose on the patient. The risks and benefits of PEG tube insertion for terminally ill patients should be carefully assessed and discussed between the IDT, the patient, and the patient’s family or surrogate to help ensure that all decisions about end-of-life nutrition are informed and appropriate.
References
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17. Position of the American Dietetic Association: ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc. 2008;108(5):873-882.
18. Cardin F. Special considerations for endoscopists on PEG indications in older adults. ISRN Gastroenterol. 2012;2012:607149.
19. Centers for Medicare & Medicaid Services. State Operations Manual Appendix PP, Guidance to Surveyors for Long Term Care Facilities. www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf. Published January 7, 2011. Accessed September 12, 2013.
20. Pioneer Network Food and Dining Clinical Task Force. New dining practice standards. Published August 2011. Accessed September 12, 2013.
Disclosures: The author has received speaker honoraria from Abbott Nutrition and has served as a consultant or paid advisory member for Abbott Nutrition.
Address correspondence to: Liz Friedrich, MPH, RD, CSG, LDN, 110 West Colonial Drive, Salisbury, NC 28144; ekf@carolina.rr.com
Article series summary: This is the third article in a continuing series on nutrition issues in long-term care. The first article in the series was published in the May 2013 issue and discussed evidence-based organizational strategies to prevent weight loss in frail elders. The second article was published in the August 2013 issue and discussed management of obesity in long-term care. The final article in the series, which will be published in a future issue of Annals of Long-Term Care: Clinical Care and Aging®, will review nutrition assessments.
