Decision Not To Use A Feeding Tube

[WEDWDW]

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.

Thank you-you are so kind.

 

[GigglyFigment]

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.

No. Not a bit. My mom passed away last week after a long battle with cancer and I refused every single time they wanted to give her a feeding tube or use any other life-prolongation methods that would not be guaranteed to be a temporary thing. I would have felt HORRIBLE if I had NOT honored her wishes. It was how she chose to end her life and she trusted me to carry out her wishes. She was also on morphine at the time.

I'm a firm believer that everyone has control over the way they choose to live (and end) their lives - especially if someone has a living will that states what they do and do not want. My mom made those choices and it was my task to respect those wishes AND see that any and all decisions respected her wishes as well.

 

[mickeyboat]

I hope this helps you - I don't want you to feel more badly than you already do, but I want you to know that it is o.k. to feel guilty.

I typed out all the details of my experiences with my in-laws, but deleted the post because I don't want to scare you. Suffice it to say that while I know in my head that letting them go was the right decision, I still feel some guilt in my heart.

Sending warm thoughts to you in this difficult time.

 

[Arielle22]

When my mom was towards the end of her life with cancer spreading through her body, the doctor wanted a feeding tube. I have 7 siblings but they were content to let me make the decisions. I refused the tube because it would only prolong her agony.

My MIL had a massive stroke in 2000. She went on to recover from it somewhat and during her recovery she did have a feeding tube. She had the tube for a few weeks. She did well for a few years but regressed and has been in a nursing home for 8 years. DH says knowing what he knows now, he would not have allowed the life saving treatment after her stroke. He has signed off on no lifesaving measure at the nursing home which includes no feeding tubes.

On the other side, my nephew was a micro premie. When he came home at 4 months he had a feeding tube inplanted in his stomach. He was on it for 2 years before he would eat enough to keep himself alive. Now you can't tell he ever had a medical problem. He races around and enjoys his life.

So my feeling is lifesaving measures are great if it is temporary to give the person the chance to recover. If it just prolongs the agony then it isn't worth it.

 

[MinnieLovesMickey12]

I would never put a feeding tube into a loved one to prolong a miserable suffering life. If they needed a feeding tube but was awake and alert and living I of course would put one to keep them alive. But if they were on their death bed anyway I would never do that to someone. I think prolonging someone's suffering is cruel. And I think the only ppl who do it are selfish and do it just to keep that loved one alive for their own sake.

 

[WEDWDW]

Sending warm thoughts to you in this difficult time.

Many thanks.

 

[low-key]

I made the call a few years ago with my mom, Im certain is was the right decision, but my sister likes me to explain it to her every 6 month or so why that was the right call

 

[MomRN]

Personally, I have only somewhat dealt with this twice. Close to home when my grandmother was terminal, and my dad relied heavily on me for decisions. She had stated before, no feeding tube, based on a situation with my grandmother in law...

She had been sick about 2 months before my grandmother died. Alert and oriented, refused a feeding tube. My MIL, listening to the advice of doctors, wanted the feeding tube. Grandmother in law won- and 4 years later is still alive, alert and oriented.

As a nurse, I've ran across this many times. Feeding tubes have all sorts of beneficial purposes, but what I'm about to say pertains to end-of-life, terminal processes. What I will find in most of my experience is that it's the patients/nurses vs family/doctors. This is biased, and only accounts for my experience in a few dozen cases, and it's certainly not 100% this way. However, I believe you will find if you ask your love ones if their chance for living a productive, meaningful life was nil or slight, the great majority would not want extra interventions. However, family members hate not being able to do everything- and doctors anymore will just go along with it. No time to argue, and there is a risk of being sued from those living- but the dead cannot sue, so interventions are done that in 90% of cases people would not want. Then there are the nurses, in carefully balancing being the patients advocate, the family support system, and the doctor's sidekick. The last thing we want when taking care of someone for 12 hours, several days-sometimes weeks- is to see them suffer. They may not be our family, but every patient holds a special place in our heart for a short period of time, and sometimes longer.

It's my profession and personal opinion that in the vast majority of end of life scenarios that only comfort measures should be enacted, and respect family that is able to make the hardest decision- the one to let go.

 

[lsyorke]

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.

DH was diagnosed with gastric cancer and passed away 3 years ago. We would never consider a feeding tube. The reality is that so many believe that the person is "starving", when in reality the body is dying and pumping high calories through a feeding tube isn't going to change that situation. A dying body isn't going to metabolize nutrition the way a healthy one is. The end result is that the feedings just add to the discomfort because they are rarely tolerated well.

Keep them as comfortable as possible...that is the greatest gift one can give.
I see this decision faced by many families(nurse of 30 years here) and once it's explained fully the decision making process is much easier. Nutrition is only one component of the dying process and in reality it's way at the bottom of the list.

 

[WEDWDW]

Personally, I have only somewhat dealt with this twice. Close to home when my grandmother was terminal, and my dad relied heavily on me for decisions. She had stated before, no feeding tube, based on a situation with my grandmother in law...

She had been sick about 2 months before my grandmother died. Alert and oriented, refused a feeding tube. My MIL, listening to the advice of doctors, wanted the feeding tube. Grandmother in law won- and 4 years later is still alive, alert and oriented.

As a nurse, I've ran across this many times. Feeding tubes have all sorts of beneficial purposes, but what I'm about to say pertains to end-of-life, terminal processes. What I will find in most of my experience is that it's the patients/nurses vs family/doctors. This is biased, and only accounts for my experience in a few dozen cases, and it's certainly not 100% this way. However, I believe you will find if you ask your love ones if their chance for living a productive, meaningful life was nil or slight, the great majority would not want extra interventions. However, family members hate not being able to do everything- and doctors anymore will just go along with it. No time to argue, and there is a risk of being sued from those living- but the dead cannot sue, so interventions are done that in 90% of cases people would not want. Then there are the nurses, in carefully balancing being the patients advocate, the family support system, and the doctor's sidekick. The last thing we want when taking care of someone for 12 hours, several days-sometimes weeks- is to see them suffer. They may not be our family, but every patient holds a special place in our heart for a short period of time, and sometimes longer.

It's my profession and personal opinion that in the vast majority of end of life scenarios that only comfort measures should be enacted, and respect family that is able to make the hardest decision- the one to let go.

DH was diagnosed with gastric cancer and passed away 3 years ago. We would never consider a feeding tube. The reality is that so many believe that the person is "starving", when in reality the body is dying and pumping high calories through a feeding tube isn't going to change that situation. A dying body isn't going to metabolize nutrition the way a healthy one is. The end result is that the feedings just add to the discomfort because they are rarely tolerated well.

Keep them as comfortable as possible...that is the greatest gift one can give.
I see this decision faced by many families(nurse of 30 years here) and once it's explained fully the decision making process is much easier. Nutrition is only one component of the dying process and in reality it's way at the bottom of the list.

Thank you both for your professional opinions.

You have really helped me.

 

[WEDWDW]

momRN and lsyorke,If you don't mind responding to one more question,I would really appreciate it.

Did I make a HUGE mistake by not insisting on Hospice care for my loved one-I feel like I definitely did.

About 2 weeks before my loved one passed away,the facility they were at asked if we wanted to call in Hospice.

Before I knew about it,another family member told them we did not want Hospice-they felt like the care by just the staff would be enough.

At that point,I could have insisted on Hospice,but this was my very first experience dealing with anything like this and I had no idea what all Hospice could have done for my loved one until after they passed away and I began to understand all that I had not done right for them.

Would my loved one have been pain free entirely those last 2 weeks-would Hospice have been there 24/7 or would there still have been times whaen they would have had to wait a while for some pain medicine?

Does everyone in my situation use Hospice for their loved one-I feel like I let them down terribly.

Thank you.

 

[MomRN]

Hospice is a wonderful organization. Wonderful. However, I work in a hospital, and hospices services are limited there. Essentially, they were an extra set of hands. They would bath the patient, if there were doubts about a doctors orders (example- starting an IV antibiotic) the nurse at the hospital could call the hospice nurse to discuss the situation and the hospice nurse would call the doctor for clarification. Hospice nurses also handled all of the end of life care- contacting the funeral home, clergy if needed, etc.

Really though, in the hospital setting, hospice is nice to have but not necessary. I'm the type of nurse that wants complete control over my patients situation, and sometimes the on-call hospice nurse comes in to prepare the final arrangements and the family has never even met him/her. I have the better relationship with the family, I would prefer to handle it.

To answer your question directly, hospice would not have been there 24/7, and there would have been times your loved one would have still waited for pain medication. Maybe the hospice nurse could have worked with the staff and doctors for a more long lasting solution (pain patch? stronger pain medication?) but that depends on the people involved and various situations.

 

[hereyago]

OP, youare going through one of the stages of grief,second guessing what you did or didn't do,but please know in your heart,you did the right things.


Hospice is on call 24/7, but a nurse isn't going to stay with a patient for hours,they have other patients. Patients at home get a emergency bag,which one of the drugs is morphine. My friends dad has Hospice, but hasn't gotten to the point of needing pain meds, so not sure.how that works.

Please take care of yourself.

 

[PanamaMike]

Not even an issue.

Went through this with 2 grandparents less than a year apart

Sad that we lost them, but no way were we going to prolong their lives just to keep them alive.

 

[lsyorke]

momRN and lsyorke,If you don't mind responding to one more question,I would really appreciate it.

Did I make a HUGE mistake by not insisting on Hospice care for my loved one-I feel like I definitely did.

About 2 weeks before my loved one passed away,the facility they were at asked if we wanted to call in Hospice.

Before I knew about it,another family member told them we did not want Hospice-they felt like the care by just the staff would be enough.

At that point,I could have insisted on Hospice,but this was my very first experience dealing with anything like this and I had no idea what all Hospice could have done for my loved one until after they passed away and I began to understand all that I had not done right for them.

Would my loved one have been pain free entirely those last 2 weeks-would Hospice have been there 24/7 or would there still have been times whaen they would have had to wait a while for some pain medicine?

Does everyone in my situation use Hospice for their loved one-I feel like I let them down terribly.

Thank you.

I did have Hospice, but the reality is that they just provided the drugs and equipment that DH needed. They offered an aide for hygienic care, but being a nurse I'd been DH's caregiver for years and chose to provide that care on my own. The good part with hospice is the availability of pain meds and having the administration of those meds in my control.

No, you didn't make a mistake, it truly is a personal choice and that care can be provided without hospice being present. That said, they were very supportive, always offering additional assistance, but I truly didn't need or ask for much. They stopped by once a week to check in and did come in the middle of the night to pronounce DH when he passed.

 

[TheZue]

We went through this last year with my mom. We decided against a feeding tube, that we wouldn't fight the dying process, that we'd let her body do what it would do. She spent a couple weeks on morphine completely unconscious. Now the surprising part is that people come out of palliative, here we are a year later and she's doing okay. For her she's doing pretty well honestly. Ironically every time we sent her to the hospital during a flare up she'd come out way worse than before the flare up; but not the time we let the nursing home provide comfort only care.

Looking back I'm very comfortable with our decision, the fact that our decision really didn't hasten anything that wasn't meant really will make it easier for next time.

 

[jdb in AZ]

DH's family went ahead with a feeding tube for his great-aunt after she'd had a stroke. Once the feeding tube was started, the doctor couldn't "legally" stop it, so it prolonged her life needlessly, in a vegetative state for several months. The doctor said that when other patients' families asked him about a feeding tube, he used DH's aunt as an example of why not to do it.

When the aunt's sister had a stroke, the family did not do the tube, and she absolutely refused to eat anything because she just wanted to pass on, without hopelessly prolonging her mortal existence when there was no chance of recovery.

When DH's mother broke a hip toward the end of her life, a hospice nurse provided the hospital with a folder of DMIL's recent medical history -- info I couldn't have provided, especially in my emotional fog. It was especially comforting to the family to have her help us through it. DMIL went downhill after that. She had a DNR -- there was never any question that the nurses would take heroic measures to prolong things, and it saved us the agony of having to make that decision for her when we knew it was exactly what she didn't want.

 

[lsyorke]

I hope that those that are reading this thread have this very important conversation with their loved ones. As hard as it seems to be, it can give them the gift of knowing that they carried out your wishes...so nothing is left unsaid.
I knew DH's wishes well and kept all the promises I made to him. Don't leave your family guessing and living with the guilt of not being sure they did the right thing.
If your loved ones won't take part in this, then you do what "you" can live with.

 

[WEDWDW]

To answer your question directly, hospice would not have been there 24/7, and there would have been times your loved one would have still waited for pain medication. Maybe the hospice nurse could have worked with the staff and doctors for a more long lasting solution (pain patch? stronger pain medication?) but that depends on the people involved and various situations.

Thank you so much for taking time to post-it helped me.

 

[WEDWDW]

OP, youare going through one of the stages of grief,second guessing what you did or didn't do,but please know in your heart,you did the right things.


Hospice is on call 24/7, but a nurse isn't going to stay with a patient for hours,they have other patients. Patients at home get a emergency bag,which one of the drugs is morphine. My friends dad has Hospice, but hasn't gotten to the point of needing pain meds, so not sure.how that works.

Please take care of yourself.

Thank you for so much for your encouragement.