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?

That sounds like a very distressing and difficult situation for you all. Is your DM able to express an opinion on her quality of life and what she would prefer to do?

What does your mum think? Has expressed now, or in the past, how she feels about extending life in ways like this?

I’m sorry.

Has this been offered as an option? If so what does your mum think?

It sounds as if she needs a referral to her local palliative care team, who are experts in symptom control. Ask her GP if this can be done.

It is a very invasive procedure and you have to be fit enough to tolerate it. People nearing the end of life usually stop eating as their body doesn't need the nutrients. It's something you really need to discuss with the palliative care team. I wouldn't put my relative through the procedure though as the body, when it's shutting down can't process the food and could make her feel worse. My sympathies to you. I hope you get some good explanations.

She’s undecided. She’s very scared and upset and wants someone to tell her what the prognosis is for the next few months and struggles to grasp that no one can.

I think she’s torn between the feeding tube as it could help, and will stop everyone well meaningly going on about food, and just not wanting to do too much to prolong everything

I have lots of experience from my DF. His feeding tube helped him for a while, when he couldn’t eat after his sinus cancer. It is pretty bleak and I’m very sorry you and your DM are going through this. Sadly, DF cancer returned aggressively and actually I wish we had withdrawn his feeding tube sooner - it’s a fine line between keeping them going and not letting them go.

All that said, practically speaking it’s fairly straightforward and you can get help from the district teams to manage it if need be. Feel free to DM with any questions. Happy to help.

However hard it is to hear I think it’s important you know that a feeding tube is rarely warranted for someone who is terminally ill. It can just prolong the process of dying.

I think you should ask for a referral to the pallaitive care team and also Macmillan nurses. In my experience (mum) and other family members, a feeding tube isn't the answer here.

I think if she is finding it distressing that people keep pushing her to eat, its the pushing to eat that needs to stop. As a previous poster said, the not eating is part of the disease progression.

Theres a really good book called A safe Journey Home which is helpful. For mum and family.

https://www.amazon.co.uk/Safe-Journey-Home-Achieving-Peaceful/dp/1848502079/ref=ascdf1848502079?mcid=a859bfd7571530ee94e61cdc733770cc&th=1&psc=1&tag=googshopuk-21&linkCode=df0&hvadid=696450770348&hvpos=&hvnetw=g&hvrand=3642533225255357616&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9045402&hvtargid=pla-491398265279&psc=1&hvocijid=3642533225255357616-1848502079-&hvexpln=0&gadsource=1

Edited for spelling

Thank you everyone. It’s so hard to unpick whether she’s so ill from lack of food or so ill from her cancer. Feeding tubes have been vaguely discussed before because of the type of cancer she has, which can prevent eating.

A part of me says that a feeding tube may just prolong the inevitable, but I’m scared that is a selfish part of me who is getting exhausted here too with the anticipation of it all.

Sadly I have to agree. As part of a recovery- with a view to rehabilitating, I can see the benefit. But as she is terminal it would seem very cruel to give one.

And thank you everyone, I really appreciate the time and the thoughts as it is so hard to get your thoughts in line

How much of her choices are made with an eye to what she thinks she should do for others versus what she might choose for herself if she had no one to leave behind?

Have you (and other immediate family) considered explicitly giving her your permission and blessings to pass away with no more interventions and without any further well meaning nudges to eat.

I am worried about that too. I don’t think my Dad is ready to say that yet but I think o could. I can try.

I think also if she were hungry, and she couldn’t eat, then there might be a case to give a feeding tube. If she is not, it’s likely her body’s way of winding down.

If your lovely Mum was still undergoing treatment with a reasonable chance of success i would encourage her to have the PEG feed.
On the other hand if it is terminal and only for symptom control i would not entertain the idea for myself or anyone else.
It sounds as if her body is naturally closing down which is the normal process.
Am so sorry for you and your family.Its so hard for everyone.X

Has she had a chance to talk to an oncology dietitian? It sounds as if she needs the community palliative care team but the dietitian may be separate.

It depends a bit on what exactly is stopping her eating but I’m afraid it is certainly possible that a feeding tube won’t help.

I agree with other PP that you should get her GP to put her onto a palliative care pathway and also for you to help your DM to decide whether she actually wants a feeding tube or not. You say I never realised once they cant treat the cancer you basically get discharged from oncology with no other care, but have you contacted Macmillian for advice? I've found them very helpful in the past.
https://www.macmillan.org.uk/cancer-information-and-support/get-help

We have had lots of chats with the dieticians and they’ve been as helpful as they can be but a lot of what they recommend mum won’t do or can’t eat. However I will get her to call the GP and find out about the palliative care team. It’s certainly not something she seems to be under, just a referral to the hospice.

The palliative care team could well
be based at the hospice - ours are. Give them a ring and ask if they can talk things through with your parents.

I'm really sorry but the reality is that this is a stage of the dying process. As the cancer progresses there is less of a drive to eat. If your DM wants to live longer and is comfortable, then a feeding tube would give the calories required. However, it may be more enjoyable for her if she switches to a 'food for enjoyment' mindset - in other words, small amounts of things she enjoys without worrying if she's getting enough calories. Pudding for breakfast, lunch and tea if she wants it. Or all the fatty cheeses, or the salty crisps and pretzels.... Anything she wants in whatever quantity she can manage, simply because it tastes good.

My mum had an NG tube fitted when she was in hospital after her stroke. I had POA due to her advanced dementia. I didn’t really appreciate quite how invasive it would be to fit the tube when the doctors explained it to me, and i also felt quite pressurised by my daughter to agree to the procedure. Although she was improving after the stroke, my mum hadn’t had any food for a week by that stage, and the doctors were also concerned about the impact the very hot weather was having on her - this was in July 2022 when we had similar temperatures to now.

I agreed that they could use an NG tube and it’s a decision that will haunt me until the day I die. My mum was 96, very frail, had just had a stroke, and had severe dementia, but it still took several members of staff to hold her down while they inserted the tube, and we could hear her screams from the other end of the ward. She had to have a scan to make sure the tube was positioned correctly before they could start to feed her, which took several hours. My mum managed to pull the tube out the next morning. I assume thst because I’d given my consent for the first time, the doctor fitted another tube. She pulled it out four times in total before she aspirated some liquid and developed pneumonia, which killed he a few days later.

I’m under no illusion that she would ever have made a meaningful recovery from her stroke, and I know she would have thought her life wasnt worth living if she could have had a crystal ball five years earlier, but my decision to let the doctors fit the NG tube robbed her of the last bit of dignity she had left and I will never be able to forgive myself for allowing it.

Sorry, I should have said thst I have had no experience of any other types of feeding tube, just an NG tube. Im very sorry for what your mum is going through and the difficult times you’re facing.

@Growlybear83 it won't make it easier, but please hear from a (former) HCP that you did your best under the circumstances and you could not have known that your DM would pull the tube, or that she would aspirate. Many patients who have had a few strokes have these discussions with their doctor and choose not to have an NG in the event of a further stroke, but if it was her first stroke with no idea as to how she might recover, an NG tube was a very reasonable step to give her time and strength to recover.

Thank you very much - I really appreciate your post.

Thank you everyone and @Growlybear83 I am so sorry you feel like that - if it is worth anything I feel like I would have made the same decision as you.

I suspect many of you are right and a feeding tube may be prolonging the inevitable and not in a good way. It is confusing decided what to do as she has esophageal cancer so the ability to eat can sometimes be a little different to how far the cancer has spread and that's why it has in the past been discussed as an option. But maybe it's not the right one.

I will try and find a way to get her to be honest about what she wants and what she is ready for but I am not convinced she's quite yet been able to work that out herself yet. I have a horrible feeling that she and my Dad still think she is terminal as opposed to actively dying, which somehow in my head feels like two different things