Decision Not To Use A Feeding Tube

[WEDWDW]

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.

 

[lovemygoofy]

I can feel your hurt from here and I am so sorry. It is never an easy decision or place where you are.

If your loved one has a no feeding tube or DNR signed, though it is difficult it has to be abided by. I know you will have guilt but for my personal situation I had peace because I knew that just prolonging life would cause more suffering. All I wanted for my family member was peace and to never suffer again. I had resigned that my family member would never be the same again and as I say there praying for her to die, I knew I would never be "selfish" and keep her here suffering. In the end peace came knowing I was doing what she wanted.

I hope you can find that peace in your difficult time and situation. I will be sending good thoughts and wishes towards you and your family.

 

[joviroxx]

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.

We had to do that for my aunt. But she had been suffering with cancer for very long. It was a REALLY difficult decision but we knew it was the right one. To see her suffering in a hospital room, where we KNEW she didn't want to be was awful.

So while it was difficult, we were at peace with it because we knew that is what she wanted. Her peace gave us our peace. You have to look at it that way.

We would have more guilt if we had put her through something she wanted no part of. Letting them go is not selfish nor is it your fault. It was a selfless and giving action and no reason to feel guilty about it. You let them pass in the way they wished , peacefully and lovingly

 

[happygirl]

I have no words just lots of hugs and prayers

 

[MickeyMom2Boys]

We went through this last October with my Father in law. He had CJD, which came on very suddenly. He lived for 5 weeks with it. For 4 of those weeks, he got worse and worse - combative, couldn't leave him alone (nurses had to stay in his room 24/7), to finally unresponsive. They put him through test after test. Multiple spinal taps, EEGs, etc. Finally, John Hopkin's was able to diagnose him. CJD is 100% fatal. We knew that he would never get any better than he was at that state (could open his eyes, had body tremors, nothing else). My MIL, DH and DSIL made the decision to move him to hospice without the feeding tube. He was suffering and our family was suffering along with him (including 4 young grandkids). He passed 1 week later.

My FIL was only 66 and fairly healthy before this. He just suddenly became disoriented one day. We thought he had had a stroke. This was such a shock to us. I don't feel any guilt about the decision that was made. It's a little different for me because it was my FIL, not my father, but I still loved the man dearly. I am about 99% sure that my DH doesn't feel any guilt about the decision either. He still stands behind that decision and says that if he were in that position, that is what he would want. Not only did it end his suffering (our main concern) but it allowed our family to move on with the greiving process and try to re-establish some sort of normal life without him. We are still dealing with the loss and the kids are having a very hard time dealing with it, but I'm glad they don't have the lingering memories of watching him suffer and just waiting for him to pass.

I will say that when my Grandmother was suffering from congestive heart failure and many other issues at the end, they did not pull the feeding tube. My Aunt just couldn't do it. My Mom still regrets that decision because she feels like it prolonged her suffering.

I'm so sorry for what you are going through. It was the hardest thing we have been through and definitely the hardest decision we have ever had to make. Only you know what is right and what you can live with. But you have to give yourself a break too. There really is no "right" answer when it comes to decisions like this. You just have to decide what the "best" answer is.

Sending lots of hugs your way during this difficult time. Praying that you and your family can be at peace with whatever your decision may be.

 

[aaarcher86]

Never been in the situation but I'm incredibly sorry that you have to go through it.

I don't think you should feel guilty following their wishes and keeping the suffering at a minimum.

 

[bookgirl]

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 and my immediate family have all discussed this. We don't want to get to the point that we feel we have to make a decision and feel guilty about it. Life support, funerals, guardianship of inheritance. All good conversations to have before you need them.

I know that if that time comes I will make the decision that they would want. I also know that I WILL feel some remorse but I hope that it is remorse for my sense of loss and thier end of life, not for the way any of us handled it.

I am very sorry if you are going through this personally, I know it must be hard. But I hope you have some comfort in that you gave some one a very precious gift. You let THEIR desicion on how to let go happen, even though it made you sad.

 

[DisneyMim]

Sadly my family has been through this twice. First with my MIL. My husband and his brother made the decision for her to have the feeding tube. She lived for about 8-9 months, knew us and what was going on, etc. They never regretted their decision. When my father needed one I was the only one who wanted it. He's "wonderful" wife (my parents were divorced and my father married a woman five years older than me. If you can't read my opinion I did not like her, big surprise) voted against it so that was what happened. I really believed that my father would have wanted one, but I was outvoted. He didn't live too long. It's a long story, but I blame my wicked stepmother for his death as there were things that happened that could have been prevented, so I am probably not the best person to ask. Anyway, it really is a personal, heart breaking decision and NOT easy. Whatever you decide, make the decision and don't look back. Good Luck and be don't beat yourself up.

 

[andysomma1]

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.

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.

 

[Mandychelle79]

My grandfather always said he did not want a tube, until the time came where it was necessary. At that time he did say he wanted one ( and was able to make his own decisions) but his lungs were in such bad shape that they couldnt operate and ever have him come off the vent, which he did not want. So we brought him home, he enjoyed his favorite foods ( by that time we werent worried about aspiration pneumonia, he was already on hospice) and spend his last days with his family doing what he wanted. We dont feel guilty about it.

Same thing with my husbands grandma, she lost the ability to swallow and the family did not want to prolong her suffering so they allowed a natural death.

 

[moon]

No. I've lived with a terrible form of guilt for ALLOWING a feeding tube for someone I loved who was dying.

I know now that I only helped to prolong his pain and suffering, and still hope -all these years later- that he forgives me for not being an ally in stoping his agony

 

[Acklander]

It's a hard decision, even when you know it's the right thing to do. I had to make the decision to take my son off a ventilator. At the time it was agonizing, even though I knew in my head it was right, in my heart I just couldn't do it - i was incapable to sign the form. He died 2 days later anyway (and I suspect that the hospital staff did for me what I should have done for him). I sometimes feel guilty over not signing the form, and his having to wait a few more days. I worry that he suffered longer because I was being selfish.

 

[wiigirl]

 

[Pigeon]

I would have a whole lot more guilt from putting in the feeding tube.

My 90 yo FIL died last year. He wanted no heroic measures, no feeding tube, a DNR, and was a retired physician. He had expressed these sentiments for years. He had a fall, was treated abominably by the staff in the ER, and ended up paralyzed from the waist as a result. He was begging to be allowed to die.

My BIL, a physician with a life at all costs mentality, insisted that every horrible thing possible be done to FIL to extend his misery. My MIL was in such a state of distress, she allowed BIL to bully her into doing things that she knew FIL didn't want.

I will always feel guilty that dh and I weren't able to prevent what happened to him.

 

[rigs32]

This is why every one should discuss this issue with family regardless of age.

 

[MinnieFan]

I'm sorry that you are facing this difficult choice. My DH and his siblings are currently going through the same thing concerning their mother, who is dying of Alzheimer's Disease.

You might try googling "Hard Choices for Loving People" (not sure if the link is allowed here or I would have posted it. It is a booklet written by a hospice chaplain, and it has a lot of information about comfort care and end of life decisions. There is a section dealing with feeding tubes. Hopefully you will find this helpful.

Whatever you decide, I wish you peace.

 

[Talking Hands]

Had to make that decision for my aunt. I was the only kin she had left. I did not allow any intervention. She died peacefully that night. It was what she would have wanted and I fell no guilt for it.

 

[SandrA9810]

My aunt had to do it for a family member. She had a major stroke, but barely alive afterwards. The doctor didn't want to do anything further, but she could still squeeze a hand if asked.

My aunt chose to have a feeding tube put in, and she was transferred back to the home she was living in. Even though it was a group facility (5 others), hospice still came in to take care of her needs. She lived for about 2 weeks on the feeding tube before passing.

I know not every story is that easy, but it worked out best for the situation.

 

[yoopermom]

My DGM102 (who died this past January) was the most conservative, keep living at any cost type person you'll ever meet (in her younger years). After 100, though, she would talk to my DH (her favorite of all the relatives) about our senior dogs, and how we never put them through any misery, and we let them pass with dignity, etc, etc. He was the one who gently guided her through signing a DNR and medical directive. When she developed pneumonia and was unconscious within days, we KNEW what she wanted done, she was treated by hospice with so much kindness, and slipped from this earth very quickly. I like to think that all of our doggies who had gone before her (and who she had loved greatly) were there waiting for her....

Terri

 

[LisaR]

I'm sorry you're going through this. We had to do this with both my father and my FIL. While it was hard at the time, we never had any guilt. It was what they both wanted and it was important for us to honor their wishes. In both cases, it would have truly just prolonged their lives, but kept them in a vegetative state which they would have hated.