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.

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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.
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Reply to AlvaDeer
stefanid Jan 29, 2021
I too am a former RN and agree 100%. The feeding tube is, in my opinion, an abomination that simply prolongs suffering. Someone whose bodily functions are slowly breaking down, does not warrant such an invasive procedure. For what purpose are we feeding someone who is dying? I fear its solely to assuage any guilt the family might feel. Hospice is wonderful. Take the feeding tube out, provide IV fluid to maintain hydration and request moderate sedation (morphine 4 mg q 4-6 hrs)so she sleeps. One of the recommendations I used to make for families is the use of frozen flavored ice tubes. Put some of slushy on the lips and tongue. If she's 'hungry' her natural response will be to lick and swallow. But if she's doesn't sense hunger, and end of life patients rarely do, its simply a caring gesture to keep her mouth and lips moist.
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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.
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Reply to GardenArtist
arrowattack09 Jan 29, 2021
Thank you very much for your thoughtful and thought provoking reply. I really appreciate your experience and will definitely consider the things that you have mentioned.
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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Reply to Waterspirit
cherokeegrrl54 Feb 2, 2021
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!!
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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Reply to earlybird

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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Reply to Grandma1954

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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Reply to Angelheart2

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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Reply to Daughterof1930
arrowattack09 Jan 29, 2021
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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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.
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Reply to MargaretMcKen
arrowattack09 Jan 29, 2021
Ma'am, my grandmother had a stroke and was in therapy to see if they could get her to improve her swallowing and regain any abilities that were lost. We didn't "chose" to put a feeding tube in knowing that she wasn't going to make any progress. The aftermath of a stroke can vary greatly. Some people recover functions with therapy and time. She did not.
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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Reply to NYDaughterInLaw

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.
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Reply to JoAnn29
arrowattack09 Jan 29, 2021
Yes, I am assuming that she would still be offered the pureed food (that she is currently eating about 20% of currently) in hospice care. You mentioned that "food is stopped when the body is shutting down"- if she is unable to swallow due to the affects of the stroke not necessarily because her body is shutting down, then should food still be stopped? I realize that this is not a quality life that she is living at this point. And I don't want to selfishly keep her around for my benefit (even though there really isn't much benefit to me at this point due to not being able to see her etc due to covid restrictions).
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