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Homecare123 Asked November 2020

My mother hasn’t eaten more than a bite in 2 months. Should I consider a feeding tube? She wants to live. She has ESLD.

This forum has been the most helpful and supportive group since I started this journey 2 months ago. A few weeks ago I asked about one not eating. My mom is distraught that she cannot eat and she keeps trying even though it makes her vomit. I live in a rural area and I only see the hospice nurse once a week. I am confused if I should be trying harder to keep her alive. Maybe a feeding tube will help her get strong enough to heal. It seems like when we are vacillating between palliative care and hospice. It seems like the same thing.

Homecare123 Nov 2020
Thank you everyone. I know that a feeding tube isn’t worth it. It is just really hard to watch someone dwindle away. I am so tired. All my mother wants to do is smoke cigarettes. It is a tiresome habit. I wish it could be replaced with food. She has an appointment with a gastroenterologist soon. It will be her first here in Colorado. We will see what happens.

Shane1124 Nov 2020
If her belly is swollen from ESLD she may feel too full to eat. I don’t necessarily know if a feeding tube will help her due to her liver disease. She may not be able to digest the feedings nor absorb the nutrients from the food. Additionally the extra fluid in her intestines may make it more difficult for her to breath or move around as it will place more pressure on her diaphragm. Many ESLD patients are on Lactulose to get rid of toxins unable to be excreted from the body via diarrhea. Tube feedings may add to the diarrhea. Then you’ll have possible skin breakdown to watch for.

Try nutritional supplements first. Offer small frequent meals. Give her what she likes to eat most. I’m not a doctor but I’m not sure she would tolerate a feeding tube. Unfortunately ESLD is of slow progression but it is a terminal disease. Try to balance quality vs quantity of life at this point.

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Midkid58 Nov 2020
My Son In Law IS a gastroenterologist and we have spoken a lot about end of life treatments and the humanity or lack thereof in end of life care. (He is the one who will be in charge of MY EOL care).

He has stated that feeding tubes as a last ditch effort to keep a person alive are pretty dang miserable. They can feed them down the nose, but it's not pleasant at all.

For short term--such as someone awaiting a liver transplant and eating is simply impossible, they are a great way to get nutrition in a patient. The key phrase here is 'short term'.

It's a case by case situation. Is your mom going to rally and get better? Or is she actively dying and wants to employ whatever is possible to stay alive?

I hope you can be upfront with your mom and make the decision that will bring you the best result. In the end, right now, it's up to your mom.

NYDaughterInLaw Nov 2020
Your mother has a terminal diagnosis. There is no enjoyment in tube feeding. Aggressive nutrition i.e. 24/7 feeding may be necessary. Tube feedings often result in severe diarrhea. I think your mother needs to fully understand the realities of a feeding tube and tube feeding in her condition before making a decision.

AlvaDeer Nov 2020
Can your Mom still make her wishes known to you. For instance if you can say to her "Mom, right now your swallow reflex isn't working so you can't tolerate food. Can we place a tube that goes down into your stomach to give you food?" Could she understand and respond? Has she expressed to you that she is ready to stop fighting, or does she want to fight on to the end? Please don't forget to speak to the person whose life you are helping make decisions for.
That said, if she cannot respond it is up to you to decide now about quantity and struggle versus quality and peace for what you recognize is the beginning of the end. This is very difficult to do; I can only hope there is supportive family with good input. What does the doctor suggest?
I am so sorry you are left with this quandary as uncertainty is painful. Make the best decision you are able for your Mom and yourself.
Do understand that tube feedings often cause terrific diarrhea and consequent bedsores; people often rip out the tube or partially remove it which is worse as the feeding can then feed into the lung. The tube may require a short surgical procedure to place if from outside the skin directly into the stomach.
Please take care of yourself so well as you are able in this last time. I so so sorry for the pain, the struggle and uncertainty. Know that you can interview hospice and still refuse to take it. They will have information for you, as well.

cwillie Nov 2020
I'm coming back to add a thought -
In my admittedly limited experience it is fear of the unknown, of pain and discomfort that often cause people the most distress and to opt for medical procedures that may not be helpful in the long run. Hospice deals with dying but it is most likely going to be a generic, knowledge, what you need is support from people with a true understanding of ESLD. The American Liver Foundation has an online forum or may be able to direct you to local supports, or perhaps you can find a doctor, nurse or social worker who works in the field that is willing to offer meaningful guidance.

DeeAnna Nov 2020
Hospice is a type of Palliative care. While Hospice has a time-limit, palliative care does not. See the websites listed for more information:
https://www.hospicesect.org/hospice-and-palliative-care
https://www.hospicesect.org/hospice-and-palliative-care/what-is-hospice-care
https://www.hospicesect.org/hospice-and-palliative-care/what-is-palliative-care

As Geaton mentioned, it is possible that there is another reason other than ESLD that is causing your Mom to vomit after eating. Maybe your Mom needs further diagostic testing to determine the actual cause of her problems with eating.

Since your mom is already being seen by Hospice, she has been diagnosed as having an "terminal/end-of-life" medical condition.
What do you mean when you state "Maybe a feeding tube will help her (your Mom) get strong enough to heal"? What health/medical problem do you want healed? Her ESLD? Most "end-state" medical problems are just that--"end stage"--" the end of" or "the last stage before death". So I really don't know that a feeding tube is going to heal anything.

The two websites listed below talk about feeding tubes in end-of-life situations. It might help for you and your Mom to look at this information.

https://americanhospice.org/caregiving/artificial-nutrition-and-hydration-at-the-end-of-life-beneficial-or-harmful/

https://www.verywellhealth.com/artificial-nutrition-and-hydration-1132312

The decision to insert a feeding tube is a personal one. Only your Mom (with the support of family and doctors) can make the decision that is best for her.

Geaton777 Nov 2020
She might have something else going on, like a growth in her stomach or at the opening of her stomach, that is preventing the food from staying down, or the disease has messed up her biology enough that she can no longer digest normally. My grandmother had pancreatic cancer and she was vomiting (blood). Is it possible to have her checked for a blockage or other issue? It may provide your guidance forward. May you have peace about all of it.

cwillie Nov 2020
This is really your mom's decision, what does she want? From the little bit of research I've done feeding tubes can help stabilize those who are candidates for a liver transplant but I think if it is truly ESLD getting "strong enough to heal" isn't really a possibility. Hospice is going to have a different mindset than her Hepatologist, I would look to them for guidance on whether or not this could improve her quality of life for the time she has left.

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