Anyone had experience of feeding tubes?

[HEC2746]

DM has terminal cancer, with no known timeline. She’s finding it almost impossible to eat; I’d say she’s lucky if she reaches 1000 calories on a good day. She hates all the calorie drinks and won’t take them, which is an issue. She’s skin and bone now and I’m worried we’re soon going to hit the stage where one of her major organs just gives up the ghost, or a simple cold becomes fatal. She’s fatigued all the time and wants to sleep a lot and right now we don’t know if that is the cancer or the lack of food. She’s not in any pain so at the moment I suspect it the not eating more than anything, though there is a chance it might be that the cancer has spread.

We are trying to make the difficult decision whether to push her “care” (that is a laugh in itself because I never realised once they cant treat the cancer you basically get discharged from oncology with no other care…) to discuss a feeding tube in the hope this will make her feel better and she will have some quality of life. Given that there is no pain from the cancer this might be worth doing. But we also have no idea what tube feeding is like and whether it’s as simple as saying, let’s do that instead.

Sorry as I’m writing this I realise we actually have a hundred other questions to ask and no one in charge of her care really and we’re pretty lost. Has anyone had a parent on a feeding tube, is it worth pushing for or is it just something else invasive and uncomfortable?

Then, as a family, you need to talk to the hospice team. That doesn't mean that DM has to be admitted, they do lots of outreach. A friend of mine went to daily sessions at her local hospice, for several weeks. But they will be able to offer help to all the members of the family

We refused a feeding tube for my mum, she had delirium & was refusing to eat, we viewed it as prolonging the agony for her, she didn't know us, was doubly incontinent & had no mobility.

I do think you very much need the hospice or palliative team to help your mum and all of you think through these decisions, it’s what they do every day.

Just something that occurred to me... I have an elderly relative, with a terminal cancer diagnosis. Their appetite fell very sharply quite quickly and we all assumed it was the beginning of the latter stages of their life. One wonderful Dr decided it would be sensible to make sure there wasn't another reason behind it and did a load of blood tests. It turned out they had extremely low iron levels which apparently effect appetite. They started on iron tablets and saw an improvement. Certainly not back to normal, but to something much more sustainable for living. I don't want to give false hope, and I don't know at what point it's kinder to allow nature to run it's course over doing tests and taking more tablets. But having remembered, I wanted to offer the suggestion. All the very best to you and your parents

i advocated for my mum against the feeding tube. I think it will only prolong your mother’s dying process. I had wonderful doctors caring for my mum in her final 6 weeks of her life. When discussing treatment they said that “people stop eating because they are dying. They do not die of starvation.

She was in no pain and gradually faded away. One word of warning for you is to be prepared for a long haul. My mum was tiny but lived 4 weeks without nourishment. She had a fluid drip for antibiotics . Eventually I asked for this to be stopped and she died very peacefully 48 hours after.

My mum died of cancer a few weeks ago.

Get the referral to the hospice and get palliative care. I haven’t had time to read the whole thread, sorry, but my mum was on a 24/7 big cocktail of drugs in her final 12-16 weeks. Morphine for starters, metoclopromide to alleviate sickness/nausea, steroids to help appetite, laxatives to keep bowels moving, stomach protector pills, all sorts - anti agitation etc. The hospice visited her at home and helped with these meds/doses. You can get some of it subcutaneously or via syringe driver.

the hospice care, whether at home or in hospice was what made the final weeks bearable. I really recommend getting a hospice referral and palliative care however you can do it.

my mum managed to die not in pain/distress because of the hospice, which was a charity hospice. Beds in hospice are exceptionally difficult to come by and me and my brother begged our guts out to get it for my mum, to whoever would listen.

I am so sorry for what you and your family are going through. Just to add to the helpful advice you have already received - an NG tube may not be appropriate for your mum given she has oesophageal cancer. The tube has to pass down the oesophagus into the stomach. If she has scarring or active tumours in the oesophagus the tube may cause further damage or even be displaced out of the oesophagus which could be fatal. Do ask the palliative care team what they think as it may be the decision is out of your hands.

With the type of cancer she has, a feeding tube is contra indicative I’m afraid. She would really need a g tube in her stomach, but unless this has already been suggested I doubt it’s an option as it requires surgery.

That's so sad. I'm so sorry you had to deal with this. Please don't blame yourself. The medical team should not have put you in this position. You didn't have enough information to make informed consent. And even with your consent that was so wrong to hold her down. I had to stop hospital doctors restarting treatment on my FIL when he was dying from severe heart failure. The drugs had stopped working, he got an infection they started treatment then stopped because he wasn't getting any better then restarted 2 days later as he hadn't worsened.

I had a very long in-depth conversation about palliative care and life expectancy...I'd just retired after 30 years as a GP doing a lot of palliative care whereas he was an interventional cardiologist wanting to get people better. My FIL was 97. He died 4 weeks later very peacefully.

I’ve personally had experience of feeding tubes (during and post comma, in an ICU ward). In answer to the question, I didn’t actually find it that invasive, I didn’t feel it, apart from insertion and extraction. I did find the ventilator quite difficult.

Sorry to hear about your Mom, sending you and her best thoughts.

I hear you OP. There is love and good advice in this thread. This is very hard for you, your family and especially your mum, and maybe my thoughts can help you too. I had an NG when I was unable to eat - I was 67 and being treated for cancer. It is uncomfortable, nauseating and frightening - even though I fully understood what and why it was being done. It is not nice, and if I were older and my cancer were considered no longer treatable I absolutely know that I would not wish to be force fed through a tube. You and your mother deserve support to help her live her life pain free, in dignity, feeling loved and cared for. The oncology team should refer you to your palliative care team, or you can self-refer. And spending time listening to her, being with her, is perhaps the most valuable thing you can do. From my own experience when I was nearly terminal, and being with my mother when she was actively dying, I found that being heard brings peace and clarity - to accept and to choose. Trust you will find the best way forward. With love.

My DM has a feeding tube as the type of cancer she has meant that during treatment and recovery eating was not possible.
It’s a day case with her being put under (light sedation) but asleep for the tube. She was in from early to about late afternoon.
Then they do education about the tube - DM was a nurse during her professional life so she knew how it worked. But that’s very different from having it done to yourself.
It needs cleaning multiple times a day. Which involves standing at a sink to rinse it out.
It was also painful for the first couple of weeks - you can feel it and DM said when moving it felt like being stabbed by a needle. It also needs to be rotated in the early weeks so it doesn’t have skin grow over it.
What shocked me is that no one came to check it was ok. DM was expected to monitor this.
It was essential for her. But if it is removed as she (hopefully) improves and then her cancer was to return I would not encourage her to have it put back. It’s an unpleasant thing to have added to your body.

Thank you yet again for more helpful and caring advice.

I’m back with my parents for a few days to help. They’re still vaguely talking about some kind of feeding tube but she looks so gaunt and exhausted I’m starting to err towards thinking it would just prolong the inevitable for another painful month or two.

I’m going to keep pushing them to phone the hospice and get a proper meeting with the palliative care team. I really need someone to actually SEE her to see how skinny she is and give us their opinion. She doesn’t need to be in a hospice yet but looking at her it really does feel like the final straight, which is so scary. I really appreciate all your kind words.

Please no to the feeding tube

I can't even talk about this properly because I find it so upsetting

So let's just say it was a proposition for my dad

No, no, no, no no

It's inhuman

It's one of those things that I think the patient would refuse themselves if they really understood what it was going to be like