Decision Not To Use A Feeding Tube

[POPCITY]

We decided not to allow the feeding tube for my grampa a few years ago. He had said he didn't want it, but by the time he needed it, he was no longer able to make decisions. We followed his wishes, and he passed peacefully. No guilt.

DH's mother did have a feeding tube, which prolonged her life for over a year. It wasn't a good year. DH still feels guilt for not arguing against it.

Do what feels right for you, OP. I'm so sorry for your situation, I know how hard it is.

 

[WDSearcher]

This question is for anyone who has made the gut-wrenching decision not to use a feeding tube for a dying loved one.

Even though you absolutely knew the loved one did not want a feeding tube and you absolutely knew the feeding tube would only prolong the loved one's suffering,did you still live with a terrible "form" of "guilt" after the loved one passed away?

Thank you.

I faced that decision with my mom about 10 years ago. We absolutely knew that she did NOT want a feeding tube or any sort of other machines. We chose -- all the kids agreed -- to not prolong the life.

I can't speak for my siblings, but while I have lived with much sadness due to her being gone, I did not have any feelings of guilt. I knew it was what she wanted, knew it would make her end more peaceful, and knew it was the right thing. I miss her and I am sad she's gone, but I feel no guilt. (And it is very important to know the difference!)

Good luck.

 

[Enchanted Minnie]

I haven't but just wanted to offer up support and hugs.

 

[DizBelle]

I'm hoping for a day when we don't have to force people to die from starvation and dehydration.

 

[lovemygoofy]

I'm hoping for a day when we don't have to force people to die from starvation and dehydration.

Aren't you a thoughtful encouraging person? And this helps how???

 

[RadioNate]

I'm hoping for a day when we don't have to force people to die from starvation and dehydration.

nasty when a poster is already feeling guilt making a difficult decision.

My great aunt had a feeding tube put in, at her son's insistence. She lived miserable existence with Alzheimer's. Screaming, crying any time anyone entered the room. Being SO terrified because she didn't know and couldn't remember who anyone was. Several bouts of pneumonia. Bed sores. Couldn't walk, talk, eventually she couldn't see. For YEARS.

Horrible.

But heck, she was "alive."

OP there is no need to feel guilt if you are respecting the person's wishes, what ever they are.

 

[MSSANDRA]

Remember that when a person in at a natural end of life stage, the body shuts down and they are no longer able to metabolize food as they once did and they simply do not get hungry as they once did. It is not a cruel, let them lie there hungry type of decision. There is never one wrong or right answer, but talk to your doctor and a palliative care person and ask all those questions.

 

[bookgirl]

I'm hoping for a day when we don't have to force people to die from starvation and dehydration.

I'm hoping you mean that we should let it be legalized for those at the end of life to choose euthanasia instead of the process that is currently available for those choosing their end of life plan.

We'd put a dog out of it's misery but let granny stick around with no ability to control her own body functions just so some sanctimonious selfish idiot can go to sleep with the knowledge that they are 'preserving' a life that they may not want to live.

I hope I can still make my own choices at the end and carry out any choice I made, Believe me I'd take my own life before I'd choose to live in a bed with a tube and someone else wiping my butt, and absolutely no dignity and no control. But at least I know that no matter how much my loved ones would mourn me they would respect me enough to let me leave this world rather than suffer.

 

[DizBelle]

I'm hoping you mean that we should let it be legalized for those at the end of life to choose euthanasia instead of the process that is currently available for those choosing their end of life plan.

We'd put a dog out of it's misery but let granny stick around with no ability to control her own body functions just so some sanctimonious selfish idiot can go to sleep with the knowledge that they are 'preserving' a life that they may not want to live.

I hope I can still make my own choices at the end and carry out any choice I made, Believe me I'd take my own life before I'd choose to live in a bed with a tube and someone else wiping my butt, and absolutely no dignity and no control. But at least I know that no matter how much my loved ones would mourn me they would respect me enough to let me leave this world rather than suffer.

Yep.....

FTR - the OP should not feel guilty about their choice AT ALL. It's the best we have right now (unless you choose to go to a country where you can do something else).

 

[NotUrsula]

Not a feeding tube, but I've had to make a similar decision about prolonging life with a dismal diagnosis. I did not choose to prolong life.

It happened 10 years ago. Does it still hurt that I had to make such a painful and difficult decision? Every day, and I suspect that it always will. Do I feel guilty? No, not at all; it was the merciful choice, and the right thing to do.

 

[SLP958]

I am a Speech Therapist (we work on swallowing and with cognitive deficits).
I have seen many patients that I thougtht were made to suffer terribly because of life sustaining measures including feeding tubes.

In some cases the kindest thing to do is nothing.

In many cases doctors don't explain that dehydration results in decreased pain and that patients are no longer feeling hunger. So unfair for families to have to make decisions without all the information.

 

[hereyago]

OP, I am so sorry your family is having to go through this.

Do not feel guilty, you know what she wanted, you are giving her what she wished.

My mom lost a lot of weight while in a rehab, a feeding tube was talked about. She didn't want it. I am her durable POA and the one chosen to make decisions when she can't. The rehab talked to me I said no, she doesn't want it,here is a copy of her living will.

She came home 74 lbs with a wound that you could see her bone. Her Dr also suggested Hospice, which she doesn't believe in and have her 6 months or less. She eats for me, her wound is closed as well as gaining weight back. I know it won't last,she just turned 80.

However, with things in place,I don't have to make those decisions.

OP, my heart goes out to you. We all have that instinct to keep our loved ones with us longer, but when they trust their loved ones to do what it is wished, we have to realize and respect those wishes.

 

[superme80]

I am so sorry you have to make this decision. My mom and aunt chose to have my grandpa on a feeding tube. He was able to get off of it and is still with us today. He was only on for a few weeks though. If he had gotten worse they would have taken him off and let him die peacefully. I am so sorry you have to make this choice.

 

[kellyjeanie]

Hugs OP - it's so hard, we've been there twice. I'm so glad your loved one gave you their wishes ahead of time so you know you did what they would have wanted - that is a gift they gave to you.

 

[clh2]

I know my parents have specific wishes - I will do the best to have those wishes honored. I know that one of my sisters will fight the wishes. And yes - it is all in writing.

For DH and me - we have an only DD. Some things happened last summer (to DD's boss's parents) that really gave us an opportunity to talk about DH and me to her. We have specifically legally taken care of our last wishes. All our DD needs to do is to honor our preferences. We specifically mentioned that we did this - so that she would not need to make these decisions on her own, and that she should not feel guilty about making any decisions - as we took care of that for her.

Hope that all makes sense without sounding morbid!

 

[ugadog99]

I have no experience with this. I just wanted to say that I'm thinking of you. I know you are struggling with something very serious. My thoughts are with you.

 

[John VN]

This question is for anyone who has made the gut-wrenching decision not to use a feeding tube for a dying loved one.

Even though you absolutely knew the loved one did not want a feeding tube and you absolutely knew the feeding tube would only prolong the loved one's suffering,did you still live with a terrible "form" of "guilt" after the loved one passed away?

Thank you.

NONE whatsoever!

IMO, absolutely ridiculous to live in guilt. Nothing but wasted emotions and energy that would be more benefitial being directed towards the living.

 

[LJSquishy]

My husband's grandmother passed away last year and I was very involved with the decisions regarding her quality of life.

She got very sick at one point and the doctor strongly suggested putting a feeding tube in (through her stomach) to prolong her life. My in-laws decided to go ahead with it, and it did help her for a little while. After a few months (she rebounded a little) she kept complaining of how uncomfortable the tube was and expressed her desire to have it removed -- knowing it would shorten her lifespan. I felt terrible for her because the tube frequently leaked leaving her soaked, it always had to be cleaned, etc.

She had it removed against the doctor's recommendation and we were even told she would likely only survive a few weeks without it. Well, she went on to live another 8 months or so without it and really enjoyed herself in those last months. She was under hospice care (and had been for quite some time) and at her nursing home she was given whatever food she wanted, no meal restrictions, no thickener added to her milk/water (she had problems choking on food/liquids). She was so happy to feel "normal" again. She did so well without the feeding tube and stopped all of her meds.

If your loved one is against a feeding tube, respect their wishes no matter what their decision is. Sometimes they are ready to go and we have to let them. It is not your decision to make.

After seeing how peaceful my husband's grandmother was being able to live out the remainder of her life the way she wanted rather than the way others wanted, it solidified our decision to respect her wishes. No one felt guilty.

 

[Disney Doll]

Back in April 2008 my 36 year old older brother had a massive, massive stroke. The hospital called a priest to give him the last rites. The doctor showed the priest and I the scan of his brain. The blood clot was the size of a child's fist. The priest told me he had never seen anything that bad and to let him know when I was ready to start working on the services.

My brother lasted six days in a coma. On the morning of the seventh day his doctor told me we needed to start thinking about putting a feeding tube in. His doctor never called for a consult with a neurologist or a neurosurgeon, so I called for one on my own that morning. Both the neurologist and the surgeon told me that if we were to put my brother on a feeding tube he would probably never come off, and if he did he would not have any quality of life. He had been running a 108 degree fever for almost seven days at that point.

It was up to me if I wanted to put a feeding tube in him. Our mother had alzheimer's and our father was already dead. Our older sister lived in Florida and with us being in Oklahoma I was the one the hospital put in charge of making decisions. My sister supported me in any decision I made.

I chose not to put the feeding tube in because I know my brother would not have wanted to lead that kind of life.

I told his medical doctor that we were not going to put a feeding tube in him. The doctor did not say a word to me, he just turned around and walked away. After my brother died he refused to sign the death certificate. The neurologist had to do it.

My brother died at 12:03a.m. the next morning. Every day I hope and I pray that I made the right decision, and that my poor brother forgives me for making it.

My heart goes out to you, and yes I still struggle with guilt today.

You absolutely did make the right decision and I am sure your brother is very grateful that you freed him from his earthly body and all its suffering.

Sometimes the most loving thing we can do is let them go.

OP, if I was absolutely certain that my loved one would not want a feeding tube and I was absolutely certain that to go against their wishes would only prolong their suffering then I would feel no remorse about not putting it in. Your loved one is at peace. And you honored their wish.

 

[LilyWDW]

Follow the person's wishes and do not do the feeding tube. There was a reason the person felt this way. Don't take away this one last piece of control that patient can have about their life.

I watched my mom suffer. They wanted to do a feeding tube. Mom had said she did not want one when she was diagnosed. I followed her wishes because I could not continue to see her suffer (she was terminal) and because that is what SHE wanted.