The development of the PEG (percutaneous endoscopic gastrostomy) tube changed enteral tube feedings dramatically.1 Prior to the creation of the PEG tube, enteral feeding options were either a nasogastric tube (NGT) or a surgically-placed gastrostomy tube. NGTs are associated with a high risk of pressure sores and aspiration. Surgically-placed gastrostomy tubes have a high procedural complication rate secondary to the need for anesthesia. The PEG tube has a significantly lower risk for complications compared with other forms of feeding tube placement.2 


Originally, the PEG tube was indicated primarily in brain-damaged chil­dren and children with swallowing disorders. Over the past 30 years, the application of the PEG tube has grown to include other medical conditions that require long-term enteral access.1 One indication that has become common is compromised nutritional status in patients with dementia. This is a controversial application because of the lack of clear evidence supporting this use. 


CASE


Mrs. C is an 88-year-old female with a medical history significant for dementia, hypertension, and hyperlipidemia. At baseline, she can identify her name and recognize her children, but she is not oriented to the date or place. Over the past 3 years, her needs have pro­­gressed to 24-hour care for supervision and assistance with all her activities of daily living (ADLs). 


Mrs. C was brought to the emergency department; she has been steadily declining over the past 6 months and is now refusing to eat. Her caregiver reports that she is unable to continue to care for Mrs. C at home. CBC, complete metabolic panel, electrocardiography, chest radiography, and CT scan of her head were unremarkable. After admission to the hospital, the workup for an etiology of worsening mental status was unrevealing for an acute cause, and she was presumed to be experiencing a progression of her dementia. 


In addition to Mrs. C's declining mental status, she was also witnessed to have difficulty swallowing. A swallow study was positive for moderate pharyngeal dysphagia with signs of severe aspiration. Her daughter, who is also her medical power of attorney, then raised the question of placing an enteral feeding tube to provide nutrition. 


THE ETHICAL QUANDARY


Is it ethical to provide enteral tube feedings for patients with dementia whose nutritional status is compromised due to either a lack of desire or an inability to eat and drink by mouth?


DISCUSSION


As dementia progresses, patients often experience difficulty with oral intake. Common complications of late-stage dementia include anorexia, dysphagia, aspiration, and apraxia, and these often result in malnutrition and weight loss. Maintaining the nutritional status of a patient with dementia can be problematic. The solution is difficult, variable, and often emotionally driven. It ranges from continued oral feedings to enteral tube feedings. 


To further illustrate the complexity of this issue, a group of cognitively intact patients aged 65 years and older were questioned in regards to their desires for enteral tube feedings in various stages of dementia. Results indicated that 75% of these patients did not want enteral tube feedings if mild dementia was diagnosed, and 95% did not want enteral tube feedings if severe dementia was diagnosed.3 Four main bioethical principles must be considered when discussing the use of enteral tube feedings in patients with dementia.4,5 


Autonomy The ethical community and court system have consistently maintained that a patient has a right to refuse artificial nutrition and hydration.6 Often, though, in the case of a patient with dementia, the responsibility of medical decision making falls on the patient's medical power of attorney. In that case, the clinician should provide the medical power of attorney with the necessary information to make an informed decision. Ultimately, the clinician should respect the decision of the patient and/or the medical power of attorney.4 


Beneficence The principle of beneficence states that the clinician should always act in the best interest of the patient. Common reasons for placing enteral feeding tubes in patients with dementia include improved nutrition, prevention of pressure ulcers, and reduction of aspiration risk. A Cochrane review evaluated the following outcomes: mortality, nutrition, functional status, and development of pressure ulcers. In regards to these outcomes, enteral tube feedings did not provide any benefit.7 In addition, a study by Finucane found that enteral tube feedings do not reduce the risk of aspiration pneumonia in patients with dementia.8 


Nonmaleficence The principle of nonmaleficence is imperative to this discussion. The clinician must ask, "Does placing an enteral feeding tube harm the patient?" Or, conversely, "Does not placing an enteral feeding tube harm the patient?"


The Cochrane review found only two studies that reported adverse events, and those events were statistically insignificant.7 The review recommended further investigation.7 


In addition to the procedural complications, fistula formation and inadvertent tube dislodgement are common long-term complications of enteral feeding tube placement.2 One study found that the average life span for enteral feeding tubes in geriatric patients was 3.8 months.9 Moreover, an editorial by Gillick highlighted that the most serious consequence of enteral feeding tube placement is the need for chronic restraint use.10 In one study, 71% of patients with dementia and enteral feeding tubes required restraint use to avoid inadvertent removal.11 Whether patients are harmed by not placing enteral feeding tubes is impossible to know. There have been no conclusive studies to show their benefit over other types of oral feeding. 


Futility The bioethical concept of futility also applies. Futility has been defined thus: "When physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of published empiric data) that in the last 100 cases a medical treatment has been useless, they should regard that treatment as futile."12 However, in studies, medical futility has been difficult to statistically achieve.13 While insufficient evidence exists to support enteral tube feedings in patients with dementia, a similar lack of quality studies support its medical futility. Keeping this in mind, the clinician may have personal experiences with patients with dementia where enteral tube feeding placement was consistently unsuccessful. 


CONCLUSION


Several journal articles have called for the discontinuation of the practice of enteral tube feedings in patients with dementia.10,14 Nevertheless, enteral tube feedings are still being offered as an option. The decision of whether to place an enteral feeding tube is difficult and complicated. Specifically, the decision to not place an enteral feeding tube is even more emotional as it can be interpreted as "starving" the patient. Also, there is a symbolic element to feeding: the pleasure of oral intake and the enjoyment of socialization during meal time.15,16 These factors affect care decisions even when presented with contrary clinical evidence.7


Not providing enteral feedings can make the patient's family feel helpless. Sometimes the simple act of offering alternatives to enteral tube feedings can comfort the patient's family. The best alternative is assisted oral feeding. Although time consuming and often 
not reimbursed, assisted oral feeding can provide adequate nutrition while maintaining patient comfort.17 In a cost-comparison study, the need for increased staffing in patients receiving hand feedings was responsible for higher overall costs in this group compared with patients receiving tube feedings. However, hospitalization was not required for complications related to feedings in the hand-fed group.17 Other authors have postulated that hand feeding provides greater human contact and social interaction.10,18


Currently, there is not sufficient evidence to support enteral tube feeding placement in patients with dementia. Use of enteral feeding tubes may cause significant discomfort due to tube complications and the need for long-term restraint use. 


CASE FOLLOW-UP


The risks and benefits of enteral tube feedings were discussed with Mrs. C's daughter. Ultimately, her daughter decided not to proceed with enteral tube feedings and to continue to oral feedings. Mrs. C was discharged to a skilled nursing facility with hospice care. JAAPA


Do you have an ethical quandary?

This department addresses the real-world ethics concerns and problems of PAs. These might include problems in practice that may be inconspicuous, problems related to systems of care, problems related to the process of care, and preventive ethics.

Please e-mail your ethics question to jaapa@haymarketmedia.com. We will consider it for discussion in a future installment of PA Quandaries.

F.J. Gianola, PA; Jim Anderson, PA-C, department editors



Zachary Hartsell and Jennifer Williams practice in hospital internal medicine at the Mayo Clinic in Arizona. The authors have indicated no relationships to disclose relating to the content of this article.

REFERENECES


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4. American Academy of Physician Assistants. Guidelines for Ethical Conduct for the Physician Assistant Profession. http://www.aapa.org/images/stories/documents/
about_aapa/policymanual/19-EthicalConduct.pdf. Accessed 
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5. University of Washington School of Medicine. Principles of Bioethics. http://depts.washington.edu/bioethx/tools/princpl.html. Accessed September 1, 2010.


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9. Petersen TI, Kruse A. Complications of percutaneous endoscopic gastrostomy. Eur J Surg. 1997;163(5):351-356. 


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18. Slomka J. What do apple pie and motherhood have to do with feeding tubes and caring for the patients? Arch Intern Med. 1995;155(12):1258-1263.