Feeding Tubes And Dementia
Many will be faced with a family member that stops eating. learn about the pros and cons of feeding tubes.
Question from Howard:
I've noticed that most of the information about feeding tubes seems to relate to dementia. My wife is relatively young, only 66, and she has been in a nursing home for just over 15 months. Despite her condition, she remains fully lucid and aware of everything around her. I am her health proxy, but the decision to have a feeding tube was ultimately hers. She has a relatively rare condition called Mitochondrial Disease, which is a degenerative neurological condition affecting multiple aspects of her health. After two modified barium swallow tests, it was determined that she was aspirating when attempting to consume anything orally. My question is straightforward: What are the potential drawbacks of having the tube, and what can we expect over time? She doesn't seem to have any other viable options, so we want to be prepared for what lies ahead.
Thank you,
Howard
Response:
Howard,
It's important to note that many younger individuals require feeding tubes, and your wife's situation is unique due to her relatively young age and cognitive clarity. Her choice to have the feeding tube is a decision to sustain her life, given her chronic condition. I understand your concerns regarding making decisions on her behalf when she can no longer express her wishes.
It's clear that her health is deteriorating, evident from her swallowing and feeding difficulties. Currently, she can actively participate in her feedings and may even manage them herself through the tube. However, it's crucial to understand that this is a life-sustaining measure, and she will not recover her ability to eat conventionally.
I would recommend having open and honest discussions about end-of-life preferences with your wife. These conversations are important for both you and her, as they ensure her wishes are respected. Many families struggle when faced with the decision to discontinue feedings, as it can feel unnatural. It's essential to recognize that the body naturally shuts down as it declines, and the dying process is a part of life.
As long as your wife desires tube feedings and believes she has a reasonable quality of life, you should honor her wishes. However, it's important to be aware that there may be repeated hospital admissions due to complications related to the feeding tube, such as aspiration pneumonia or the need for tube replacement.
I understand your concerns, and the nursing home likely has a social worker who can assist you in having these end-of-life discussions. Your wife's wishes may evolve over time, which is entirely normal. It's not uncommon for individuals to want to prolong their lives as much as possible to avoid leaving their loved ones behind.
Seek clarity from your wife about her thoughts on her current quality of life. If she were to enter a coma or become bedridden, she should make decisions about her care in those circumstances. Ultimately, your role is to honor her wishes.
Diane Carbo, RN
Pros and cons of feeding tubes
Conclusion:
Empowering yourself with knowledge about feeding tubes and weighing their potential benefits and risks is the key to making a well-informed decision. Engaging in thorough research enables a deeper understanding of the implications of using feeding tubes, ensuring you make the most suitable choice for your loved one or yourself. Additionally, taking proactive steps in advance care planning is vital to guarantee that your medical treatment preferences are honored, especially if you ever lose the ability to express them.
The decision to have a feeding tube should be made with utmost care, considering all relevant factors, to ensure the patient's needs and overall well-being are prioritized.
Above all, it is crucial that any determination regarding the use of feeding tubes is rooted in what best serves the patient's overall health and quality of life. Through thoughtful contemplation and consultations with healthcare professionals, you can determine whether feeding tubes align with your or your loved one's needs and preferences.
Remember, it's essential to recognize that feeding tubes are a life-sustaining measure, not a remedy. While they can sustain life, they do not inherently enhance one's quality of life.
Resources:
- National Institute on Aging. "Feeding Tubes". https://www.nia.nih.gov/health/feeding-tubes
- American Academy of Family Physicians. "Overview of feeding tubes in the elderly."https://www.aafp.org/afp/2006/0415/p1411.html
- Mayo Clinic Staff, "Tube feeding: Is It Right For You?". Mayoclinic.org, https://www.mayoclinic.org/diseases-conditions/tube-feeding/in-depth/tube-feeding
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Diane Carbo