When a loved one is terminally ill, one of the most challenging decisions that families face is whether to use tube feeding or not. Tube feeding is a medical intervention that delivers liquid nutrition and hydration through a tube inserted into the stomach or intestine. While some people may think that tube feeding can prolong life or prevent starvation, the reality is that it may not offer any benefits for hospice patients. Tube feeding can pose several risks that can negatively affect the patient’s comfort, dignity, and quality of life. In this article, I will share some of the risks of tube feeding for hospice patients based on my experience as a hospice nurse.
Increased Risk of Suffering and Decreased Quality of Life
Tube feeding can have adverse effects on the physical, emotional, and psychological well-being of hospice patients. Here are some of the risks that I have observed in my practice:
Decreased Quality of Life: Tube feeding may not improve the overall quality of life for terminally ill patients. It can be burdensome and uncomfortable, causing distress and interfering with the patient’s ability to focus on more meaningful aspects of their end-of-life journey. For example, tube feeding can prevent the patient from enjoying the taste and texture of food, which can be a source of pleasure and comfort. It can also interfere with the patient’s ability to communicate, socialize, and express emotions to their loved ones.
Increased Discomfort: Inserting a feeding tube can cause discomfort, pain, and potential complications such as infection or injury to surrounding tissues. One of my patients has had three infections in less than three months due to the feeding tube. These physical discomforts can add to the patient’s overall distress and may not align with their goals of comfort and dignity in their final days. Moreover, tube feeding can cause side effects such as nausea, vomiting, diarrhea, bloating, and cramping, which can further reduce the patient’s comfort and appetite.
Reduced Mobility and Independence: Tube feedings often require patients to be confined to bed or restrict their movement, limiting their independence and ability to engage in activities they enjoy. Most of the time, this can be eight to twelve hours of being forced to stay in a single spot. This loss of mobility can impact their sense of autonomy and overall well-being. It can also increase the risk of pressure ulcers, muscle atrophy, and joint stiffness, impairing the patient’s physical function and causing pain.
Potential Complications: Tube feedings can lead to complications such as aspiration pneumonia, where food or liquid enters the lungs instead of the stomach. This can cause respiratory distress and increase the risk of infections, leading to further discomfort and hospitalizations. Furthermore, as the patient becomes closer to the actual dying process, the risk of these complications, including fluid overload, becomes abundant, and this increases the amount of suffering the patient will go through. Fluid overload can cause swelling, shortness of breath, and heart failure, which can be life-threatening and distressing for the patient and their family.
Psychological Impact: Being dependent on tube feedings can have psychological implications for patients. It may contribute to feelings of helplessness, loss of control, and a sense of being a burden on their loved ones. Emotional well-being is crucial during the end-of-life phase, and tube feedings may not align with a patient’s desire for peace and emotional closure. Some patients may feel guilty, angry, or depressed about their situation and may lose their hope and motivation to live. Tube feeding can also create ethical dilemmas and conflicts among family members, who may have different opinions and beliefs about the patient’s best interests.
Conclusion
Tube feeding is a complex and controversial issue that requires careful consideration and discussion among the patient, their family, and the hospice interdisciplinary team. The primary goal of hospice care is to provide comfort and support, focusing on the patient’s physical, emotional, and spiritual well-being. Tube feeding may not achieve this goal and may cause more harm than good for hospice patients. Therefore, it is important to explore alternative approaches to nourishment and hydration that can be more beneficial and respectful for the patient. These include mouth care, small sips of fluids, and providing food that the patient enjoys and can tolerate. These methods can help patients maintain their dignity, comfort, and quality of life while honoring their wishes and values.
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Currently, there is no universal director of end-of-life doulas (EOLD). It’s essential to note that some EOLDs listed in directories may no longer be practicing. The author recommends starting with IDLM, as their training program is always current and thorough, followed by NEDA, which is the only independent organization not affiliated with any school.
