Should we remove the feeding tube or not?

I can't speak specifically to your questions, but do want to share experiences with removal of a feeding tube.    A major issue is being able to communicate and understand instructions on function and care of the feeding tube.   Given your GM's decline, I would doubt that she could understand why she's undergoing the ordeal of having a feeding tube.

And it seems that sensory deprivation is a strong factor in her life at this point.

When my father had one, for several months, we had to change our entire life to accommodate tube feedings every 4 hours, and up until about 1 am b/c Medicare didn't provide larger capacity bags for 24/7 applications.    It was a very difficult challenge for both of us.   And it was depressing except for the fact that Dad was rapidly improving physically, so there were strong motivations.

My father was 85 at the time, my sister had just died, so I could focus all my caring on Dad.   He eventually was able to eat normally again, although he developed dysphagia in his later years.  

I can't answer your specific questions, but I  know that if I ever face that situation, I WILL NOT have a feeding tube.   If there isn't a strong possibility that someone can recover, I think it just accentuates the misery of aging adaptations.

If your GM hasn't progressed, and is swallowing (and possibly aspirating) about 20% ) I think you probably are aware that that can lead to aspiration pneumonia, or more obviously, choking.   That kind of choking and coughing and attempt to clear even pureed food from the throat is hard to watch, and probably harder for the individual.

You seem very compassionate, and you're aware that your GM doesn't have much quality of life now.    I think that would be a major consideration in considering whether or not to prolong her life with a feeding tube.

A very blunt but realistic question is what does she have to look forward to?

I hope you spend some time in solace, considering all the options, and asking yourself if you would want to spend your last years in a similar condition, and that you make a decision with which you feel comfortable.    I offer my best wishes for comfort and peace to your family during this challenging time.

People ask some variation of this question fairly often on AgingCare so I've bookmarked an article that you may find helpful, although it specifies Alzheimer's I think that the basic points still apply:

https://www.choosingwisely.org/patient-resources/feeding-tubes-for-people-with-alzheimers/

I would get a speech pathologist involved with your mom's swallowing issues. It's possible that her swallowing trouble can be remedied and the tube removed so she could eat again, if she had the desire to eat. People in their final stages of life do not feel hunger and do not feel starved. Consult with a hospice agency to see what their plan of care would be. Hospice is all about comfort care and death with dignity.

But apparently, as you say, they are offering her food and she does swallow some. The drive to eat does leave; there is no hunger and this is why you see so much wasting. I have feeding tubes and IV total parenteral feedings forbidden under any and all circumstances in my advanced directive. As a retired RN I dread and fear being kept alive in the shell that bears no resemblance to what my life was.
I fear from all you say that you will question yourself if you withdraw these feedings. I certainly would not, but you seem to be. I will tell you that these feedings often lead to diarrhea and bedsores, just more torment.
If you are ready for your grandmother to pass, if you accept that she is at the end of her life, then I suggest you do as the doctor has advised. If you do not accept that she is at the end of her life, and feel that you are starving her to death, then I suggest you withhold a decision until you discuss further with her MD. Hospice is for those who accept that the end of life is essentially now here. That while some interventions may prolong (the often tormented) few days, weeks or months, these interventions will not stop death coming. Being born is a pre existing condition; we will have to die. If you have hospice your loved one will not suffer agitation, hunger, air hunger, but will be medicated for peace and an almost dream like sleepiness. Will this cause an earlier death? Perhaps by some minutes or hours or days. But not by much more.

Your post says “We had a feeding tube put in to see if she would make any improvements with swallowing, talking, moving, etc. She has not.” If you had known that there would be no improvements, would you have had the tube put in? Probably no.

Your worry is now whether she will feel hungry if the tube comes out and she wastes away feeling hungry. You’ve been told that the opposite might happen, and she will start eating again. If she doesn’t, on hospice care in the end stages of life she is most unlikely to feel starving hungry. As the body closes down, it does not need food and can't digest it. Most people eat nothing at that point, and the most they want is something to keep their lips and mouth moist, painted on.

Perhaps you need to go back to your original ‘choice’ about the feeding tube. It’s hard to feel that you are making ‘life and death’ decisions for someone you love, but many of us are faced with it. A painless death with dignity is the best any of us can hope for. Love in a difficult time, Margaret.

Hospice does not stop food if the person can eat. Food is stopped when the body is shutting down. First thing to go is the ability to swallow. When actively dying, the body can no longer absorb food and liquids. Its worst to feed someone than not feed someone at this stage.

It is my understanding (and experience) that hunger is usually absent as the end of life nears, so the few bites of food she does eat would be enough to satisfy (and you'd be amazed at how long people can live on very few calories). Always offer, never force is the best motto, if she wants more she will try to eat more but I suspect that the little bit she does eat is all she really wants. If she does want to eat and expresses hunger and you also find that she is choking or distressed you can always revisit the issue.

I haven't had any experience with a feeding tube, so I can't give you any practical advice regarding that.
Did your grandmother ever discuss HER preference about what she would and would not want at the end of her life? Much like Alva, my mom was very vocally against anything like a feeding tube.
I suggest strongly you reach out to hospice and put this all before them. Tell them you are only looking for information regarding feeding tubes at end of life. It doesn't obligate you to engage them just because you reached out to them for information! If you don't like what you're hearing from them, then don't engage their services. As Joanne said, my mom's hospice didn't encourage us to withhold food; rather they let mom decide how much she wanted to eat based on how hungry she was.
I would also suggest you talk more in depth with GM's medical team. I would specifically ask if she is swallowing 20% of her food, is that enough to keep her from painfully starving to death, which seems to be your main concern. It could be that the 20% she is able to swallow is enough to keep her comfortable. The last few weeks of my mom's life she ate less and less; she was also having trouble swallowing, and everything was "dry", even stuff covered with gravy. But she never complained about being hungry, and I let her eat however much she wanted. Frankly, as the end came, I was more worried about complications from her eating too much rather than not enough.
I hope you can find an answer that will give you and your family peace. I am sorry that this is so difficult for you. (((hugs)))

My mother received a feeding tube after a huge stroke. It was placed on advice of several doctors who told us she had a good chance of recovery and just needed to be fed properly until she regained skills in therapy. She could literally not do one thing for herself physically but was mentally intact, it was beyond cruel to witness. Her recovery, despite much and many therapies, never came. She never progressed beyond puréed food and eventually lost the ability to tolerate even that. The feeding tube was her only source of nutrition for a long time. There was never a time to remove the feeding tube as she was always mentally aware, laughed when I told her jokes, tried to speak though her speech was tough to understand, and made her personality known. If she’d not been aware or interacted with us, I think it would have been different. She did reach a point toward her end of life where she couldn’t tolerate tube feedings, and we changed to hydration only. She slept a deep sleep during this time, but was kept comfortable with hydration through the tube. I wish you peace in deciding this, there are no easy answers. It was beyond hard to see my mother live such a frustrating and sad existence. I do think hospice can guide you in this

I don’t know if this will be all that helpful but.....my FIL had a feeding tube while on hospice. He had cancer-multiple myeloma. When he moved out here to California, he was in very bad shape. Prior to moving here, he was having difficulty swallowing and could barely talk. I don’t know if his drs at the VA in Texas were incompetent, or if they had diagnosed him and he just didn’t tell but....once he landed in the hospital here in Cali, he was quickly diagnosed with a condition that I cannot recall, it is a complication of cancer that causes you to lose the ability to speak or swallow. So that is why he got a feeding tube. He had it about 3 months and then he went into a nursing home on hospice because there was nothing more the drs could do for him. There were no issues with the feeding tube until a week before he died. In the middle of the night, he pulled out his feeding tube. We do not know why. He was taken to the ER and they put it back in. And 3-4 days later, he pulled it out again! Back to the ER he went. And 2.5 days later, he died in his sleep. He had been medicated and was sleeping a lot but he was not actively dying. We suspect he pulled the feeding tube out because he was ready to go. When he first pulled it out, he wasn’t really in a responsive state because of the pain medication (FWIW the heavy pain killers were because he was in severe pain, not because hospice drugged him!). My husband went to the ER when we got the call and his dad wasn’t responsive. I think his body probably was shutting down at that point. The unfortunate thing is, my BIL was his medical POA and he wasn’t really involved and didn’t communicate with hospice so when we got the call about the feeding tube we were in the dark about his health status. My husband visited him once a week but nobody told him anything. So my personal belief is that his body was shutting down and he was uncomfortable and that’s why he kept pulling the tube out.

So sorry about your grandmother. My brothers girlfriends mother had a double stroke and could not move or eat , just blinked her eyes for 5 years. The family wanted a feeding tube placed, was afraid she would starve to death. My family and I had a close relationship with her and it was sad when we visited her in the nursing home. We prayed holding her hand that God would take her one day. We left in tears that day A week later she passed away. The family later had regrets about keeping her on the feeding tube for 5 years. I would not continue with the feeding tube and If it was my mother I would have it removed and let nature takes its course. My brother and father did not have tubes or IV's, they were medicated to keep them comfortable and pain free. They died with dignity and comfort. Prayers sent to your dear grandmother and family.

As a person declines the need for food declines. This happens to everyone and is part of the process.
If she had been on Hospice PRIOR to the stroke they would not have recommended the feeding tube and probably not approved it. (but not 100% sure on that since the stroke was not what made her eligible for hospice)
Weaning her off the tube is probably the best. When the body no longer "needs" food if you were to continue to supply the food it is not digested properly and that can lead to problems. The signs that she is not needing the food are missed when a feeding tube is in place. Turning away form food, eating far less, closing the mouth when a spoon is brought to the mouth. With a feeding tube all of these signs are ignored or are unable to be given. Also the feeling of hunger is not the same as what we experience.
If she is eating 20% of her food orally that should be what she needs now and more frequent offerings of food and food that is higher calorie dense might help.
You also have to remember that her need for food has declined, she is not expending calories at a high rate.
I would remove the feeding tube.
Hospice will make sure that she is comfortable.

My heart goes out to you. TOTALLY different circumstances, but almost three years ago my husband and I (he's an only child) made the decision not to give "heroic medical treatment" to my sharp as a tack, still mowing the lawn, 89 year old father-in-law after complications from a "simple, out patient surgery".

We moved him to hospice and I broke down in tears when I asked how painful it was to die from dehydration. The thought was horrible! We just didn't want him to suffer. They assured us that they would keep him comfortable and pain free. The truth was, he would've been suffering had we tried keeping him alive. It was a difficult decision, but it was the best decision. The right decision. Hospice did a great job. Just be warned, it is only a myth that you die without water in 3 days.

I wish you peace with whatever decision you come to.

In my opinion, hospice sounds like what you want for your grandmother. And I would remove the tube. She still eats albeit only 20% of her pureed food. Think of it this way: the feeding tube is artificial nutrition. It does come with many side effects including diarrhea. Diarrhea leads to skin breakdown, which is horribly painful. Your grandmother is almost 90 and I would focus on her quality of life including making sure that whatever pureed foods she gets are pleasurable to her.

Is there any way she is able to nod yes or no when asked about tge feeding tube?

I would not want to be kept alive by a feeding tube.

I would have it removed and have her on a liquid diet using a straw and let her live or die in peace.

Prayers

These are the reasons people should have a living will or advanced directive. If you don’t want artificial nourishment or hydration it should be in writing. A good book to read about death, dying and our medical system is Being Mortal.

You sound like a loving, caring and considerate grandchild. I would not remove the feeding tube for the simple reason that you are not now nor will you ever be comfortable with it. Are you certain that the only way she can be accepted by Hospice is to remove it?

Is your grandmother suffering? I expect this is difficult for you to assess, assuming that you are not able to visit her; but ask around. Ask the people who have daily contact with her.

The thing is. If your grandmother is stable and shows no signs of distress, what is the rationale behind changing her management? It might be a relief to remember that you don't have to make this decision. Waiting for developments is a valid option.

There is no better solution than allowing Hospice to care for your grandmother at this point in her life. We allowed Hospice to take over after Mother's fall at 98 yrs. They kept her comfortable and we allowed her to go in peace.

There are many things that happen at the stage of life your grandmother is in and I found Hospice was helpful in understand all of it. Ask as many questions as you need to. Get that understanding. Remember, to quote you: "She doesn't show any reactions or emotions- doesn't seem to recognize anyone, show signs of pain, cry, etc" then, as I remember the decision, it was time for "me" to let go also. I had to remind myself that most of my questions were to keep her with me and not what was best for her.

Making that final decision to let our loved one go is the hardest thing I ever have had to do. But at the same time it was also the greatest release. Does your Mom have a DNR, do you know what her final wishes really are, I pray you do, that is what you need to work with now. Taking our own wishes out of this situation is so very hard.

I would say, ask your self only what would she say. What would be her answers to all these questions. Loving Prayers for you and your family.

My mother is an exactly the same position right now. It has now been three weeks since she is had anything to eat or drink and has been in the active dying stage. She gets morphine every 2 to 4 hours and mostly sleeps although occasionally she will make some noise if she seems uncomfortable. It’s a terrible thing to watch. I really did not think I could possibly go on this long and yet it does, day after day.

To remove her feeding tube IS to starve her. She would last a few weeks without food. However, if she does not receive hydration except through her feeding tube, she will die of dehydration within a week more or less. How are they going to "keep her comfortable" without a feeding tube to give her medications?

A dignified end is one that allows her to pass when it is her time, My feeling is that her memory care unit is suggesting speeding up the process. Given her age, there doesn't seem to be a reason to "speed things up" except for the suffering of the family members who remember her as a more vibrant person. If you do not change anything, she will eventually pass sooner or later.

I am a retired nurse so I can see both sides. It is a very hard decision to make. It is a shame she didn't make her wishes known in advance. I strongly support advance directives. I myself have had one since about 30. Anyway, back to the subject. Call hospice and let them meet with the family. They really are wonderful. I just lost my mom a few weeks ago and I had hospice care for her, in the home, at the end. You need to try and put your feelings aside and decide what your grandmother would want. What quality of life is she having now? Would she want to live with a feeding tube basically keeping her alive? Even though she isn't eating she can still get morphine to keep her comfortable. People don't always cry out in pain. Sometimes it can be a facial grimace, moving around in the bed trying to get comfortable, or a noise. Most of all if you do decide to remove the feeding tube and bring hospice, make sure every family member says goodbye to her. I have seen people hang on and on just waiting forr that one person. It doesn't have to be in person. If they are a distance away it can be done over the phone. I beleive that hearing is the last thing to go. Again, I know it is hard but what would your grandmother want?

No one responding here should make a judgment about this most difficult of decisions based on their own beliefs which in some cases is not medically correct.

That said, I will share my experience with two patients I cared for in Hospice. One woman had deteriorating Alzheimer's. She developed a blood cancer. Her 4 adult children discussed with the oncologist about putting a feeding tube in. Doctor said no surgeon would agree to that surgery and the cancer would most likely hasten her death. My colleague and I did a family meeting one night with the 4 children (2 women, 2 men). The sons were afraid she was starving to death and uncomfortable. I gave the example of when we are busy working, hungry, no time for a meal and shortly after, we no longer feel hunger pangs. Also, the dying body no longer requires what it did while we were active. My colleague then asked them, "if Mommy could come out and tell you what she wants, what would she say to you"? That made the decision in peace for them all as they immediately replied, "don't you dare keep me going".

The second patient was a man terminally ill with Alzheimer's. He lived alone with his wife who took exceptionally great care of him. She opted for a feeding tube due to her fears of his starving. For FIVE years he hung on. My colleague visited her one day and she said, "if I had known, I never would have allowed them to put in a feeding tube"

These just give you some food for thought. Lean on Hospice. It is the work that they do and will support you. This is a decision that ONLY you can make. Wrap yourself in teflon as people will have opinions about whatever you decide. Do not take on any of others' comments. Prepare a response. Maybe something like this: "I'm sure you are trying to help me, but until you have walked in my shoes, I'd appreciate your support, not suggestions or judgments".

Know that this is the most difficult decision you will ever make but others who have been faced with this, support you. Godspeed to you and the journey Gran is making.

I believe man’s medicine often gets in the way of , being called home. Hospice is a God send... as they will keep your loved one comfortable during the natural dying process.

A feeding tube in the situation you describe would be considered an 'extraordinary measure.' It is probably causing her discomfort and is getting in the way of a dignified, natural death.

When a person is actively dying, they stop eating and they are not hungry.

Obviously none of us have been in the same situation that your grandmother is in, so we can only speculate as to what we would want done if we were in her place. After reading several things about feeding tubes, I have decided that I would not want nutrition, but I would want hydration. Maybe I'm wrong, but not having food at that stage of life is probably not suffering, but dying of dehydration seems like it might be painful.

As I said, nobody really knows what it is like at the very end, but we make decisions based on the best knowledge and experience we have.

Praying for a peaceful release for your grandmother and comfort for you and the rest of her family.

Short answer - ask yourself "would my grandmother want to live like this?' I understand the desire to spare your grandmother a painful death, but being forced to live with no chance of a "normal" life is more painful, in my opinion.

I hear how you feel. I would seek medical input to help you make your decisions. But as you explain it, I feel she is slowly on her way out and probably would not know what is going on. Please don't make her just "exist" as that would be cruel. It is over or near the end and she shouldn't suffer. See what would hasten this without causing pain. There must be ways and that way you would show your love for her.

Imho, you should consider what actions (or no action) that your grandmother would want. This was my mother after she suffered an ischemic stroke and was on palliative care. Prayers sent.