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Nutrition at the End of Life

Updated: Mar 19, 2023

March is National Nutrition Month! What better way to celebrate this month than by reflecting upon our relationship with food?

Think about what food means to you. How does food make you feel holistically? Does food bring you comfort, connection, or quality of life? Do you have shared family traditions or celebrations involving food? Food plays a multitude of roles in our lives. Whether that role is bringing people together or giving us energy to keep us moving, food sustains and enriches our daily lives. Sometimes food can be nostalgic like mom’s roast beef dinner, or it can bring comfort, like a big bowl of mac and cheese. Food inspires us to communicate, to connect, and to have gratitude. For the creative souls, food is an opportunity to display passion. For the nurturing souls, food is a way to show love and care. Preparing and serving food for loved ones until everyone is satiated can provide a profound sense of satisfaction. However, what happens when food becomes something else entirely? What happens when food no longer serves as a vehicle to sustain life? What happens when one’s once over-flowing appetite becomes nonexistent: when eating a small cracker becomes a colossal task? I hope to discuss these questions and more as we delve into end-of-life nutrition.


End-of-Life Physiological Manifestations Related to Nutrition

On a physiological scale, end of life directly affects nutrition. When the human body is dying, organs shut down. The action of the gastrointestinal tract (GI tract) which includes the mouth, stomach, small intestines, large intestines, and anus all slow. The metabolism of the dying person slows which decreases appetite. Thus, the mucous membranes lining the tract become dry due to decreased supply of food and water intake. As the intake of water lessens, the GI tract loses its moisture, which results in reduced or absent ability to swallow and eliminate waste. Since the nutritional demands of the dying person drastically change, this can manifest in a multitude of behaviors. When trying to feed the dying person, sometimes the lips will close tightly, he or she will pull away or push to prevent from being fed. These are signs that the person is not hungry. Further, instead of chewing the food that is placed in the mouth, the food is left in the mouth without chewing. This could be a sign the person is not hungry or alert enough to eat. Increased drowsiness leading to decreased level of consciousness is normal and expected at the end of life and trying to feed individuals in this state can result in serious harm.


Family Dynamic Changes

Feeding loved ones can be viewed as a symbol of love and caring, which is something family members take pride in fulfilling. When family members notice a decline in appetite in their loved one, it can be a devastating and emotional time. The family can feel like they are not able to show their love in a way that they are used to, which can contribute to negative feelings that can be detrimental to their overall well-being. But the emotional impact can be decreased. Sometimes, family members require knowledge of how food can affect their loved one’s comfort, and reassurance regarding the physiological changes that are occurring. Family members do require compassionate direction towards what they can do for their loved one's comfort, how they can provide care and love for the dying person.


What Can Be Done?


Educate the family

At the end of life, it is important the family understands that when an individual is dying, the body needs change. Metabolism is slowing down due to decreased activity and movement. Food is not required as much as previously because body systems are slowly shutting down. When food or drink is forced upon a dying person, there is a significant risk of aspiration, and as a nurse, I have witnessed this in my practice several times. It is a frightening event for everyone involved. The aspiration can cause pneumonia or even death. Further, feeding the dying person can cause extreme discomfort related to gas build up that will be difficult to release which results in bloating and abdominal discomfort.


Sometimes, the dying person can come in and out of consciousness. At times, he or she can still be alert enough to ask for food and drink, and if this is the case, it is encouraged to provide what is requested. Just be aware that he or she may only eat a few bites and feel full. Family members can try to offer favorite foods in small portions when alert enough to eat. Feeding assistance may be required if the dying person is too fatigued and family members report feeling useful when they can assist. If there exists uncertainty about whether feeding or eating is safe, always ask the professional healthcare team to assess. However, once someone who is dying begins to deny food and drink, listen, and do not force feed. This signifies that the body is naturally taking its course towards death.


Comfort Measures Related to Nutrition

At the end-of-life, mouth swabs dipped in water or your loved one's favorite beverage can bring comfort to the individual. The flavor of a favorite beverage on the receptors in the mouth can stimulate happy chemicals like oxytocin in the brain, while also moistening the lips and mouth. Simply dip the swab in the beverage and place the swab around the lips and mouth of the dying person to keep their mouth and lips moist. Ice chips can be used if the dying person is alert enough, and lip balm can be used to prevent the lips from drying. It is also important to re-position frequently every few hours with pillows, which will encourage trapped gas to release to prevent bloating and abdominal discomfort.


Health Care Team and Nutrition

If you notice your loved one is choking on liquids, contact your health care team for a potential swallowing assessment. The liquids may need to be thickened so that choking can be prevented to eliminate the risk of fluids entering the lungs. Further, it is important that if the dying person is alert enough to eat, they are positioned in a safe upright sitting position.


I wanted to mention that artificial nutrition exists as a treatment that can be done via a percutaneous endoscopic gastrostomy (PEG) tube or intravenously via total parenteral nutrition. Intravenous (IV) fluids like normal saline can be utilized to hydrate as well. I have also implemented subcutaneous hydration for those without adequate veins for IV. There are benefits to artificial feeding, but it depends on numerous factors, like prognosis and the state of health of the individual. However, in the event of someone at the end of life who is no longer desiring food or drink, evidence suggests the artificial nutrition can enhance suffering. According to the National Hospice and Palliative Care Organization (2015), “doctors agree that artificial nutrition and hydration can increase suffering in patients who are dying and no longer have the ability or interest to eat food and drink liquids themselves. Artificial nutrition and hydration can add more discomfort to a dying person’s physical symptoms such as: bloating, swelling, cramps, diarrhea, and shortness of breath.” It is always within your best interest to seek advice from the health care team regarding when artificial nutrition is a good option, and when it is causing more harm than benefit.


It is important to reflect upon how our relationship with food changes drastically as we advance throughout our lives. Eating and drinking can become a daunting task when disease and the dying process affect factors like appetite and level of consciousness. Comfort measures and compassionate education for family can be utilized to ensure proper nutrition interventions at the end of life. It becomes important to ensure the dying person has full control over his or her wishes and needs. Forceful feeding to someone who is no longer hungry is never okay and can contribute to suffering. It is within the best interests of the family and dying person to include a professional health care team for assessments, questions, and suggestions.


Reference

National Hospice and Palliative Care Organization, 2015. Artificial Nutrition (Food) and Hydration (Fluids) at the End of Life. Caring Info. Retrieved from: www.nhpco.org

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