The Ethics of Tube Feeding in Dementia: Life-Sustaining Nutrition or Prolonged Suffering?

Updated: Oct 14

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

Matthew Ahlers

Oct 64 min read

The Future of Food Allergies

Food allergies are an immune system overreaction to proteins in a wide variety of foods. In fact, more than 50 million Americans are affected by them, some critically, and some moderately [1]. That is a staggering 1 in 10 adults and 1 in 13 children in the United States [7]! Eggs, fish, milk, peanuts, shellfish, soy, tree nuts, and wheat account for 90% of all food allergies, but there are occurrences of allergies for almost every food [1]. Details about some of the extreme cases of allergies can be inferred from personal examples such as the Klein family: 13-year-old Carly Klien is severely allergic to peanuts, tree nuts, sesame seeds, shellfish and many fruits. This extreme sensitivity has limited her quality of life as she constantly has to be minimizing risk, like calling restaurants and stores ahead of time [2]. One day, on an airplane, Carly had an allergic reaction to a sesame seed on her seat. Luckily, she took Benadryl and her cold-like symptoms were reduced. Now she uses disinfecting wipes whenever she boards an airplane. Her mother expresses, “It is challenging to see things her older sister (Katie) can do — the experiences she can have — and know that Carly will never be able to do those because there is too much risk involved [2].” However, what if the millions of realities like Carly's could be changed through medical innovation?

On February 16, 2024, the FDA approved the drug Omalizumab (Xolair) to moderate allergic responses. In a double-blind clinical trial, 168 total subjects who were allergic to peanuts and two other foods were split into control groups and randomly given Xolair or a placebo. 68% of those given Omalizumab were able to consume 2 peanuts (600 mg) without moderate or severe symptoms. Only 6% of those in the placebo group had the same results. These statistics are encouraging, and the drug is highly studied as was originally approved in 2003 for the treatment of asthma [3]. Omalizumab functions as a “sponge and picks up the allergy antibodies” that would normally cause problems in the body [4]. Dr. Kelly Stone of the FDA summarizes the research by saying, “While it will not eliminate food allergies or allow patients to consume food allergens freely, its repeated use will help reduce the health impact if accidental exposure occurs [3].”

Another exciting method to possibly end all food allergies is by utilizing gene editing tools. CRISPR is one example of this and it has received much attention lately as its applications could theoretically be utilized to treat all diseases related to the genome. DNA engineering has the ability to alter human or even plant DNA to knock out culprit allergy genes. For example, researchers have used RNAi technology to zone in on and disrupt the Ara h 2 gene to create nonallergenic peanuts that would reduce allergic reactions in humans [5]. This technology “refers to a phenomenon where small pieces of RNA can shut down protein translation by binding to the messenger RNAs that code for those proteins [9].” The Ara h 2 protein in peanuts is known to bind to specific proteins in those with peanut allergies. One study was able to reduce the Ara h 2 content from 27.73% in wild-type peanuts to 2.87 - 6.24% in altered peanuts using RNAi technology [8]. Much more research is needed in these areas, but the implications are exciting.

Additionally, a survey study in the Journal of American Medical Association estimated the economic cost of childhood food allergies to be around $24.8 billion. The estimate was made by accumulating a sample of 1643 surveys from parents of children with food allergies. The possibility of reducing or neutralizing food allergies before they even begin would save lives and improve quality of life by granting freedom to families like the Klein family. Instances like these represent food allergies are a critical issue that needs to be addressed now [6].

Graphic by Ariha Mehta

Reviewed by Sanjana Anand

References

Food Allergies: Symptoms, Treatments. (2023, September 8). Cleveland Clinic; Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/9196-food-allergies
Personal Stories. (n.d.). Mary H. Weiser Food Allergy Center; The University of Michigan. Retrieved October 3, 2024, from https://medicine.umich.edu/dept/foodallergy/outreach-advocacy/personal-stories
FDA Approves First Medication to Help Reduce Allergic Reactions to Multiple Foods After Accidental Exposure | FDA. (n.d.). U.S. Food and Drug Administration; FDA. Retrieved October 3, 2024, from https://www.fda.gov/news-events/press-announcements/fda-approves-first-medication-help-reduce-allergic-reactions-multiple-foods-after-accidental
Got Food Allergies? Omalizumab is a Game Changer in Preventing Severe Reactions | URMC Newsroom. (2024, April 26). The University of Rochester Medical Center Newsroom; URMC Newsroom. https://www.urmc.rochester.edu/news/publications/health-matters/got-food-allergies
Wang, M., Schedel, M., & Gelfand, E. W. (2024). Gene editing in allergic diseases: Identification of novel pathways and impact of deleting allergen genes. Journal of Allergy and Clinical Immunology, 1, 51–58. https://doi.org/10.1016/j.jaci.2024.03.016
Gupta R, Holdford D, Bilaver L, Dyer A, Holl JL, Meltzer D. The Economic Impact of Childhood Food Allergy in the United States. JAMA Pediatr. 2013;167(11):1026–1031. doi:10.1001/jamapediatrics.2013.2376
Facts and Statistics - FoodAllergy.org. (n.d.). Food Allergy Research & Education; FARE. Retrieved October 4, 2024, from https://www.foodallergy.org/resources/facts-and-statistics#:~:text=How%20Many%20People%20Have%20Food,more%20than%2027%20million%20adults.
Dodo, H. W., Konan, K. N., Chen, F. C., Egnin, M., & Viquez, O. M. (2007). Alleviating peanut allergy using genetic engineering: the silencing of the immunodominant allergen Ara h 2 leads to its significant reduction and a decrease in peanut allergenicity. Plant Biotechnology Journal, 2, 135–145. https://doi.org/10.1111/j.1467-7652.2007.00292.x
Staff, A. A. S. (2019, September 30). What is RNA Interference? | Ask a Scientist. Ask a Scientist; https://www.facebook.com/thermofisher. https://www.thermofisher.com/blog/ask-a-scientist/what-is-rnai/

Pranav Kannan

Sep 23 min read

Who said death was funny?

The multicultural stigmatization of death and dying has sparked an ethical controversy surrounding the use of humor in end-of-life care by medical providers. Humor is a crucial mode to connect with patients undergoing a challenging experience. Yet, balancing the line between comedy and sensitivity regarding such a serious subject poses a difficult challenge for medical professionals. Determining the clinical significance and cultural acceptance of humor may offer insights into how comedy can be utilized as a vital asset in healthcare.

Humor has made a noticeable impact on wellbeing. Several studies have shown that humor in medical settings has enhanced patients’ pain tolerance, as demonstrated through a cold pressor test (1). Moreover, humor has enabled patients to alleviate stress and mitigate agitation towards specific procedures or practices. Krotos et al. illustrated this by introducing clowns and jesters at elder care homes, resulting in decreased doses of psychotropic medications throughout their stay (2). Medical professionals practice beneficence or the act of working for the patient’s well-being. The studies prove that humor actively works to improve the mental state of terminally ill patients and thus should be adopted into standard practices. Comedy helps patients feel more secure and relaxed about their situation, easing tension. However, these studies have limitations, as many experiments employing humor in palliative care lack a longitudinal nature, making it challenging to deduce all trends in humor’s impact on patient health (3).

The cultural perspective of humor must be considered when evaluating if comedy is a viable treatment method for end-of-life care. Maintaining a sense of humor was rated as highly important in a Western/European cultural setting of patients (3). When dealing with a heavy subject such as death, the type of humor employed can have a significant impact. The balance between discussing the course of action and humor is essential for medical professionals as it could disrupt patient autonomy or the principle on individual choice of treatment. Humor in this setting could skew patients to opt for procedures or therapies that they wouldn’t regularly do, violating this fundamental principle.

Moreover, the delivery of humor has an impact on patient health. Research has indicated that cynicism or sarcasm can harm patient health and morale, although the extent of this disruption is still being explored (5). Studies have shown that appropriate forms of humor that validate patients’ experiences can enable them to distance themselves from death and feel less isolated during their stay at palliative care homes. Yet, the most challenging limitation in studying cross-cultural humor responses is the variety of definitions that define humor, limiting the ability to compare many humor studies on patient health (4). Overall, medical professionals who incorporate humor into their practice were able to significantly assist their patients in understanding their conditions and ultimately improve their quality of life.

Humor is widely recognized as an effective coping mechanism for stressors, and its utilization in medical settings aims to provide a better quality of life to terminally ill patients. (6) However, how doctors and nurses employ humor can have diverse positive effects on the patient, from enhancing pain tolerance to reducing medication dosage levels. One thing is clear: death and dying are morose subjects to discuss, but humor might be the best way to reflect, cherish, and acknowledge the natural end of life.

Reviewed by Kiara Lavana

Graphic by Eugene Cho

Sources

(1) : Weisenberg M., Tepper I., Schwarzwald J. (1995). Humor as a cognitive technique for increasing pain tolerance. Pain 63, 207–212. 10.1016/0304-3959(95)00046-U

(2): Kontos P., Miller K.-L., Mitchell G., Stirling-Twist J. (2015). Presence redefined: the reciprocal nature of engagement between elder-clowns and persons with dementia. Dementia 16, 46–66. 10.1177/1471301215580895

(3) Linge-Dahl LM, Heintz S, Ruch W, Radbruch L. Humor Assessment and Interventions in Palliative Care: A Systematic Review. Front Psychol. 2018 June 19;9:890. doi: 10.3389/fpsyg.2018.00890. PMID: 29973892; PMCID: PMC6020769.

(4) Bag, B. (n.d.). JOURNAL OF PSYCHIATRIC NURSING. The use of humor in palliative care services. https://jag.journalagent.com/phd/pdfs/PHD_12_2_173_179%5BA%5D.pdf

(5) Ruch W., Heintz S., Platt T., Wagner L., Proyer R. T. (2018). Broadening humor: comic styles differentially tap into temperament, character, and ability. Front. Psychol. 9:6. 10.3389/fpsyg.2018.00006

(6) Lee, E. J. (2020, July 1). Humor in health care. Journal of Ethics | American Medical Association. https://journalofethics.ama-assn.org/article/humor-health-care/2020-07

DMEJ

Duke Medical Ethics Journal