Not sure about NG tube for my father......

I meant to say that I really think you've done the right thing, OP.

I'm very sorry to hear about your father. My mum had a stroke just under two years ago and couldn't swallow. I had never heard of NG tubes before and was persuaded by the occupational therapist to agree to them inserting one. I should have done more research but I was put under a lot of pressure and I was conscious that my Mum hadn't eaten for over a week by that time. I will never forget her screams as they tried to insert the tube for the first time - it was truly horrible. They failed to get it in and then managed to get it in place a couple of hours later. It still took about ten hours before they could start to feed my Mum because she had to have an X-ray to make sure it was in the right position. The nurses put mittens on her because they could see that she was trying to pull it out. Within minutes she had gnawed her way out of the mittens and pulled the tube out. My mum pulled the tube out another three times before they inserted a slightly different tube with a bridle type fixing which they said she couldn't possibly pull out. Needless to say she got it out within a couple of hours.

After my Mum died and I was clearing her house, I found a note saying that in the event of her suffering a stroke she didn't want any interventions like forced feeding, which she had never told me about, and she had never mentioned this to me either. It broke my heart to think that I had allowed that to happen and it's probably the biggest regret of my entire life.

🌷

So sorry that you are going through this, I think that you're decision was the right one.

@TheSingingBean No advice but sending love to you and your family.

Can I add what a brave decision you are making, many would shy away and go for life at all costs. You should be proud of your strength for your father at this time.

I’m so sorry, it is so hard to have these conversations but I’m glad you feel a sense of peace.

I was asked for permission for my 88-year-old father to have an NG tube in hospital after he was admitted for possible aspiration pneumonia. I was horrified because his ReSPECT form clearly said that he wanted invastive treatment kept to a minimum. The doctor was lovely and very kind, but I burst into tears as I felt I was being forced into a position where I had to tell them not to throw everything they had at him. This also included an x-ray, which ran the risk of breaking his bones (he was ossified by Parkinsons into a position where his knee touched his chin).

My friend gave me the best advice - ask the consultant what they would do if it were their relative. I did and he said 'we've been through something similar recently and we prioritised comfort'. We managed to get him home, eating purees and drinking small amounts of water. He died, peacefully, at home about two weeks later. Maybe he'd have lived longer if I'd left him in hospital with his NG tube, endless rounds of antibiotics, but I think it was right thing.

Good luck.

Hi - also see if one of the SLT team can be at the meeting?

I imagine that the thinking is that NG tube would be temporary to give your dad a route for nutrition to give his body time to recover his swallow reflex. Its impossible to know how much recovery he will be able to make post stroke, which is hard, there is no right answers. Some people don't recover much sadly but some people recover more function. (if only we had a crystal ball) The drs will have looked at his head scan but every brain and person is different.

If he was on my ward the options would be

1. continue nill by mouth - safest option all the way - NG tube and then PEG feeding tube if needed. ( agree with you on the ethical issues here about what to do when/if someone nears end of life and difficult conversations needed about when to stop feed. Some people may have said clearly 'i never want to have a feeding tube)

2. time limited NG tube with oral trials of food or fluid (depending on what the SLT feels is best. ( to see if there is any recovery in a week, if no recovery you and medical team can agree on a more palliative / compassionate care pathway with discharge planning around this or continued rehab if improvements made/

3. free water protocol - thin water only (mouth care important). swallow may or may not improve and he can be reviewed by SLT as needed

4. food and fluids as wanted / able for quality of life - accepting risk of aspiration and/or not getting enough food fluids (this would be the more palliative approach)

The drs and SLTs will talk about 'risk of aspiration' ( food fluids going into lungs) if you go for some form of food/fluid orally. The SLTs will call this eating and drinking for quality of life, accepting risk. It might be different if drinking or eating is causing your dad distress because of his poor swallowing but medical team feel he might be able to make some recovery.

Im sorry if i have been blunt in my post. i am so sorry to hear about your dad, strokes are horrible and the sudden nature of them can be so cruel. Make sure the medical team know you do not want to prolong any suffering, hopefully you will all be on the same page for his care.

Sorry you are going through this. NG tubes are usually a temporary measure, and are less invasive than the longer term option (peg feeding). Talk frankly with his doctors. If they feel it is worth giving it a go, then it probably is. They won't want to be causing unnecessary suffering to him either. Remember, it isn't a permanent decision. If he hates the NG and pulls it out, it doesn't need to be replaced.

It is likely the doctor will guide you with this after listening to your concerns. They aren’t in the business of causing further suffering but if they feel he has a reasonable chance of recovery from the stroke in time then they should make that clear to you. I would have thought if they are suggesting a NG tube that they think the latter. You need to get some clarity on what their expectations are for recovery and rehabilitation. I’m sorry you and your father are going through this.

If they think it's a long term issue I'd be asking about a PEG tube, it's through the abdomen and can be hidden under clothes.

I wouldn't be happy about the possibility of an indefinite NG and mittens.

I’m sorry to hear what has happened to your father.

You should know people can pull NGs out quite easily with the mittens on, and the mittens can distress some people. Often people who become distressed by it need the NG to be bridled in and a 1:1 carer to prevent them from pulling it out.

If you make the decision to consider options other than active treatment, it’s out of love and compassion.

Ultimately, this is a conversation between his consultant and you. Talk to them about how you are feeling about the ethics of it, they will be able to explain his situation in regards to this in greater depth to you if you wish.

Completely agree with @Gruella - sometimes treatments are brutal and distressing and only prolong a miserable existence. You know your father and what he would have wanted (or not wanted).

So sorry to hear this has happened and you are in this position.

I would be guided by you knowing your father best and what he would want.

If you were to refuse an NG tube, it would be from a place of love and compassion, not a death sentence.