People love food—not just for its nutritional value, but because it activates reward mechanisms in our brains. Energy-dense foods, in particular, are encoded as highly rewarding. Unfortunately, for some individuals, particularly those struggling with debilitating illnesses like Alzheimer's dementia, the ability to enjoy food diminishes over time. Among people aged 65 and older, an estimated 6.9 million Americans are living with Alzheimer's dementia in 2024.1 This number is expected to triple by 2050 as life expectancy continues to increase.2 About 2.1% of these cases are likely to develop into advanced dementia, a progressive and incurable condition that's a leading cause of death in the United States.3 At this advanced stage, patients experience a decline in mental and physical abilities that can affect their ability to move, speak, eat, or drink. About 50% of these patients lose the ability to feed themselves within 8 years of diagnosis.4 For these individuals, the simple pleasure of enjoying a meal or a snack becomes impossible, often necessitating the use of feeding tubes—a form of medical technology that allows for the artificial supplementation of eating.
The initiation of the enteral feeding tube in patients with advanced dementia presents a complex ethical dilemma for families, healthcare providers, and caregivers. Recent studies have questioned the efficacy of enteral nutrition in patients with advanced dementia. Contrary to some common expectations, tube feeding has not been shown to prolong survival, improve quality of life, or prevent aspiration pneumonia in patient populations affected with advanced dementia.2 In fact, some research suggests that tube feeding may increase the risk of aspiration pneumonia and pressure ulcers.4 Providing nutrition via percutaneous endoscopic gastrostomy (PEG) can be “burdensome and even life-threatening” due to a number of complications including infection, hemorrhage, stoma (opening in the abdomen that allows an enteral feeding tube to be inserted into the stomach) irritation, and tube dislodging or clogging.2 Numerous studies provide compelling evidence that in most patients with advanced dementia, PEG carries negligible benefit, if any, and instead causes actual harm.2,4
One of the primary ethical challenges in this scenario is the loss of patient autonomy due to cognitive decline. As dementia progresses, patients lose the ability to make informed decisions about their care, including whether to receive enteral nutrition. This responsibility often falls on family members or designated surrogates to make these critical decisions on behalf of the patient. Advanced directives can play a crucial role in preserving patient autonomy; however, traditional advance directives may not be the best choice for decision-making in dementia cases specifically.4 Individuals making healthcare decisions on behalf of demented patients, known as surrogates, should be cautious when interpreting gestures like pulling on feeding tubes, as such actions may not reliably reflect the patient's true preferences. While respecting the patient's autonomy is crucial, decisions regarding artificial hydration and nutrition (AHN) should also weigh ethical principles like beneficence and nonmaleficence. When a patient's wishes are unclear, surrogates should prioritize the patient's best interests in guiding their decisions.2 Healthcare providers must also carefully consider any previously expressed wishes of the patient regarding life-sustaining treatments.
While enteral nutrition may prolong life, it does not necessarily improve its quality. The placement of feeding tubes can be uncomfortable or even painful for patients with advanced dementia, potentially causing distress and confusion.5 Additionally, the use of feeding tubes may lead to a loss of human-to-human interaction that occurs during hand feeding, which can be a source of comfort and connection for patients.2
Decision-making regarding enteral feeding can be influenced by medical, but also cultural, religious, and personal factors. Some families may favor aggressive medical interventions, including tube feeding, regardless of prognosis, based on cultural and social factors, some of which include “fear of discrimination or a religious conviction that life should be prolonged by medical interventions”.2 Healthcare providers must be sensitive to these aspects while also providing clear, evidence-based information about the realistic expectations of tube feeding in dementia patients.
Economic factors can also significantly impact decision-making in the context of PEG in patients with advanced dementia. Hospitals are often pressured to reduce patients’ length of stay, leading to transfers to post-acute facilities like skilled nursing facilities (SNFs), which operate on narrow profit margins. The insertion of a PEG tube can medicalize eating, allowing for higher Medicare reimbursement for the first 100 days of SNF care after hospitalization. This creates a financially advantageous situation for both hospitals and SNFs, as PEG tubes facilitate quicker hospital discharges and increased reimbursement rates. Additionally, SNFs face regulatory scrutiny and potential sanctions for patient weight loss, which may lead them to use PEG placement inappropriately as a means of demonstrating adequate patient care. Consequently, physicians may face pressure from hospitals or SNFs to insert PEG tubes as a requirement for admission to SNFs.2
Given the complexities surrounding this issue, a case-by-case approach is recommended when considering enteral feeding in patients with advanced dementia. Everyone on the care team of a given patient must be aware of the realistic expectations of tube feeding in patients with dementia, as it can be difficult to withdraw once it has been initiated. Healthcare providers should engage in thorough discussions with family members or surrogates, providing comprehensive information about the potential benefits and risks of tube feeding. The decision-making process should involve a multidisciplinary team, including physicians, nurses, ethicists, and social workers. This approach can help ensure that all aspects of the patient's care are considered, including medical, ethical, and psychosocial factors.4
The ethical quandaries surrounding enteral feeding in patients with advanced dementia are multifaceted and challenging. While tube feeding may seem like a logical solution to nutritional deficits, the current evidence suggests limited benefits and potential harms in this population. PEG tube feeding may be easier for staff, but "comfort feeding" by hand can be a more acceptable alternative for families, allowing patients to be fed as long as it does not cause distress. Healthcare providers must navigate these complex decisions with sensitivity, considering patient autonomy, quality of life, and the realistic expectations of enteral nutrition. Ultimately, the goal should be to provide compassionate care that aligns with the patient's values and best interests, whether that involves tube feeding or alternative approaches to nutrition and comfort care.
Graphic by Alej Gonzalez-Acosta
Reviewed by Connor Barritt
References
Alzheimer’s Disease Facts and Figures. Alzheimer’s Disease and Dementia. Accessed September 30, 2024. https://www.alz.org/alzheimers-dementia/facts-figures
Schneider PL, Fruchtman C, Indenbaum J, Neuman E, Wilson C, Keville T. Ethical Considerations Concerning Use of Percutaneous Endoscopic Gastrostomy Feeding Tubes in Patients With Advanced Dementia. Perm J. 2021;25:20.302. doi:10.7812/TPP/20.302
Shin JH. Dementia Epidemiology Fact Sheet 2022. Ann Rehabil Med. 2022;46(2):53-59. doi:10.5535/arm.22027
McNamara EP, Kennedy NP. Tube feeding patients with advanced dementia: an ethical dilemma. Proc Nutr Soc. 2001;60(2):179-185. doi:10.1079/PNS200083
Enteral tube feeding for people with severe dementia. doi:10.1002/14651858.CD013503.pub2