Should we remove the feeding tube or not?

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Should we remove the feeding tube or not?

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My grandmother is almost 89 years old. She has been diagnosed with vascular dementia, and has been declining within the past 5 years. For about 3-4 years now, she has been in a memory care/nursing facility. A couple months ago, she had a stroke. It was considered moderate, but left her unable to swallow, walk, talk, etc. She doesn't show any reactions or emotions- doesn't seem to recognize anyone, show signs of pain, cry, etc. After her stroke (because she couldn't swallow), we had a feeding tube put in to see if she would make any improvements with swallowing, talking, moving, etc. She has not. Doctors estimate that she swallows 20% of her pureed food daily. She is being supplemented with the feeding tube. She is under palliative care, and they have asked if we would like to move her into hospice care. They said that if she is in hospice care, they would wean her off of the feeding tube, and focus on solely keeping her comfortable. They said that she IS medically stable- she is not actively dying, and not rapidly declining. I (and my family) do not want to prolong her suffering, or for her to merely "exist". We are unsure if we should or should not put her into hospice care and wean her off of the feeding tube. I'm so afraid that if we pull the tube, she will starve to death. I do not want her to feel hungry, starving, etc. I couldn't imagine a worse death for her- to slowly waste away. Palliative care made a comment about how sometimes when the remove the tube, the patient will try to eat more on their own, which further makes me think that they feel horribly hungry and malnourished. I DO NOT WANT THAT. Ugh. Does anyone know if there is a way that hospice care can make them NOT feel hungry, etc? My grandmother is the most important person in this world to me. I want to make sure that she is absolutely comfortable and not suffering in any way when she passes. I want a dignified end for her. Please help.

Care Decisions End of Life Feeding Tube Senior Health

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Why rush the situation. You said, “She is medically stable, not actively dying, and not rapidly declining.” You have answered your own question. Don’t try to be academic about her condition. You will know when it is time. Your love for her will tell you.

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You haven't been able to see her for almost a year???!!!! Does any of her family get to visit with her? How can you be expected to make decisions through other people? This is HELPING our seniors? It is cruelty! Can you not demand to see her so you can assess where to go with her care? Can she be brought home and cared for by hospice in your home? We were able to bring my mom home as she was able to afford nursing care and it has been a Godsend , even if difficult to care for. You need to be able to say goodbye and if she is stable and not suffering leave her as she is until you are able to be with her again.

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I am sorry to hear about your grandmother. My Mom went through a similar situation. She was 80 years old, had a massive stroke last Christmas left her paralyzed on one side, lost cognitive ability, and unable to eat except for swallowing a few spoons of pureed food a meal. Doctors recommended her to go to hospice. They gave up on her and needed to make room for Covid patients. They also wanted to know if I wanted her to have feeding tube. I decided against it because I had seen family members being bedridden for many years due to stroke. I would not want Mom to go through such horrific punishment. Mom passed in hospice a week ago. It was a very difficult decision, and I still believe it was what Mom would have wanted.

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Ask yourself this question: What would your grandmother want? Most of us would prefer a painless hospice experience and a a peaceful slide into death rather than having tubes. The dying usually aren’t hungry so you don’t have to feel she is in pain.

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This is just to comfort you, if your grandmother loses a lot of weight. My mom can still swallow, but she just doesn't eat much any more. She is hardly more than skin and bones now. She doesn't feed herself much anymore, and she often turns her head away or tells us "no more" when we try to feed her. I don't think she has felt hungry for a couple of years now. She eats out of a sense of duty, or because we ask her to. Not eating doesn't cause her discomfort or distress. People trying to feed her upsets her more.

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I am not a doctor, but I can tell you this - Hospice knows their stuff. Hospice will not let your Grandmother suffer. One thing I did learn from them, when a patient is actively dying, having a feeding tube in them can actually cause them pain. I would never want one, but you know what your Grandmother wants more than anybody. There is no right or wrong answer here as far as what your Grandmother would think of you making this decision for her. She knows whatever it is you decide, it will be made with love. God bless

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I think it's a lot crueler to extend an elders life in THIS condition than to remove artificial feeding tubes and allow nature to take its course. If the original idea was to install the tube to see if she'd improve and she hasn't, then you have your answer. And hospice is there to provide comfort care, meaning, they will keep her comfortable and not hungry or suffering in any way until her heart stops beating on its own. To me, this is the very definition of dying with dignity and grace.

Never an easy decision, but one you should make as if you were making it for yourself. What would YOU want your end of life experience to be like, if you had the choice?

Sending you hugs and a prayer for peace.

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lealonnie1: You're so right. I knew I had done the right thing for my mother.

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My mom's mom suffered a stroke & a feeding tube was placed. After her death we had a conversation & she told me that she never wanted to have a feeding tube if there was no chance to recover. I encouraged her to have her wishes expressed in her Advance Directive & she trusted me enough to have me as her MPOA. She had Alzheimer's & CHF. At the end (Hospice was called in) she was unable to swallow & take her meds for CHF. Because we had talked about her wishes, I knew it was time for her to be made comfortable & let Hospice lead the way. I knew that my mom was comfortable & that comforted me. I hope that you & her decision makers have a discussion about what she would have wanted. Make your best decision for her & be at peace with it. Best wishes in whatever is decided. Prayers sent to her & her family. 🙏💜 Please, anyone who reads this response speak with your family & fill out your Advance Directives so that your family will know your wishes & don't have to hesitate to make this type of decision. You can always update it as your health changes.

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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.

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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.

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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.

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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.

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For both of my parents, their doctor and hospice nurses told us that food was easily done without but dehydration is definitely a painful way to die. Your ideas are wise

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

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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.

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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.

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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.

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Thank you Waterspirit, for putting your words in plain English instead of medical jargon. I think if anyone is or has been in this situation they will surely understand.
And i agree 100% with your words to those in pain and dealing with these decisions. And yes they are the hardest you will ever have to make. God bless your decisions in love and what is best!!
Liz

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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?

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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.

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Not a helpful or compassionate answer. To remove the tube is to allow nature to take its course. She is able to swallow some food. I feel they facility is trying trying to speed things up. They are advising the family who may not realize there are options to the feeding tube. It is one thing to use the tube to help support nutrition in someone who is alert and aware but unable to swallow. This lady is not aware, essentially unresponsive except to swallow some food which can be a reflex rather than a voluntary act. Her family wants to be sure she does not suffer, not speed things up.

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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.

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Have all family members said goodbye to her? As a nurse I have seen people hang on waiting for that one person to say goodbye. Just let her know that you will miss her very much but you will be okay. If any one in the family hasn't said goodbye yet they need to do that. It can be done on the phone if in person is not doable.

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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.

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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.

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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?

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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.

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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

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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.

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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.

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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.

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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.

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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.

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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

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Thank you so much for sharing your personal experience with this issue. It is nice to hear from someone who went through something similar (though you had the added aspect of your mom's mental sharpness). When she could no longer tolerate tube feedings, was she sleeping deeply? I'm wondering if you witnessed any suffering between taking the tube out and switching her to hydration only. Or was it a situation where she was already sleeping most of the time, and just continued that when you made the switch?

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