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

[TheSingingBean]

My 88 year old father fell and had a bleed on the brain resulting in a stroke.

He is currently in hospital and has failed his swallow assessment (though he has managed a little water by mouth). The doctors are talking about fitting a NG tube and then covering his hands with mittens to keep him from pulling it out.

He lives in residential care and until the stroke had a reasonable quality of life. The stroke has affected him badly and it's difficult to know how much he understands. I have POA for health & welfare.

I've asked for a meeting with the doctor tomorrow. I'm struggling with the ethics of either agreeing to the tube or asking them to withhold it. I am fearful that his life could be prolonged rather than improved, and I know he would not want a lengthy and protracted decline if his current level of impairment is not likely to improve.

Does anyone have experience of this? I feel torn between consenting to an invasive procedure that may only prolong his suffering and denying him the means of nutrition which is in effect a death sentence.

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.

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).

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.

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.

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.

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.

Thank you for the responses and kind words, I'm really grateful.

I was looking at articles online but mostly they are academic / research type stuff and while not unhelpful I needed some more human perspectives.

I feel a little more prepared for the meeting tomorrow and have a better grasp of the questions I need to ask. Thanks again.

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.

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.

I'm SO grateful for the replies - thank you for taking the time to respond.

Sailawaygirl, your outline of the options was enormously helpful. I had a good discussion with the doctor and he went away to check a couple of things for me. We have now decided to prioritise comfort, understanding that this is likely to be the beginning of the end of my dad's life.

As soon as I saw my father I knew it was the right decision and although it was very upsetting to have to have the conversation I came away with a sense of peace about it.

The consultant was unavailable today so the doctor said he will discuss with him tomorrow and I guess it's just possible they will come back with a different recommendation, but I doubt it. And if they did, I feel a renewed confidence that comfort rather than treatment is the best way forward.

Thanks again.

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

@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.

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

🌷

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.

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

I'm so sorry Growlybear83, that sounds terrible. You did what you thought best though - but I totally understand the regret you feel. And as one of the doctors said to me today, they are very geared towards intervention.

My dad had mitts on when I arrived today (unknown to me they had already attempted to insert a tube and he had got it out, despite wearing the mitts). At one point he lifted his hand to his mouth and started pulling at the mitt with his teeth, as you describe - it was very distressing to watch. The doctor told me they had had 'a bit of a fight'........this isn't what we want for him at the end of his life 😔

I am now wondering what happens about hydration..... I will need to ask tomorrow. Is he likely to stay on IV fluids, or does 'comfort care' usually mean sips of water when he wants it but otherwise no hydration? I guess I'm trying to anticipate how long his decline might be......

Of course there's always the possibility that his swallow might improve on its own. They plan to offer 'risk feeding' in tiny quantities (as Sailawaygirl described above) so who knows, he might turn a bit of a corner. But at the moment I'm preparing myself for end-of-life care - and it's ok. Heartbreaking, but ok, if you know what I mean.

When the hospital finally gave up with my mum's mg tube, her swallow had improved slightly and they started giving her very very small amounts to eat and drink but unfortunately she aspirated something within a couple of days and developed pneumonia. But things could very easily have gone the other way and she definitely perked up a bit when she was able to have a cup of tea and a tiny bit of food, so hopefully your dad may turn a corner.

My daughter and I both got covid at about the time this happened with my mum and she spent two days declining whilst we couldn't visit her, and then I got a call from the doctor to say that they were very concerned. They got a minister to give her the last rites with us watching on an iPad and then after much pleading the doctor decided that they would move her to a side room and give us full PPE so that we could be with her. It took five days in total for my mum to pass away from the time it became apparent that she had aspirated food or drink but she died with dignity and with us holding her hands.

My DM was in a nursing home after an aneurysm, and had a mini-stroke. As a result she was unable to eat or drink and was put on tube feeding. I live abroad so I didn't really realise what was happening, but she became non-communicative and was more or less comatose when we came to visit.

But...she had had an active life and despite the aneurysm was fit as a fiddle, strong as an ox. So what tube feeding does is to give you exactly the right amount of nutrients to match your very low amount of energy burnt. And, unless you suffer from some other ailment, it will maintain the status quo in your body - for a very long time.

So my DM was like this for a number of years, with a non-existent quality of life. And the nursing home just said that this was the way it was and there was nothing they could do except continue. We didn't have an LPA either. Cynical me now understands that the nursing home was just milking the cash cow for fees...

After a few years I switched nursing homes because I wasn't happy with the attitude, then on one visit I happened to bump into her GP. He said, why don't you write to the home to express your wishes that if the tube comes out, it shouldn't be put back in. I was not happy, if the previous nursing home had told me that I could have written it about 3 years previously.

As I understand it, a letter of wishes doesn't have the power of an LPA, but it still has to be taken into account. What I didn't know then was that actually the tube comes out fairly regularly and it's just standard to shove it back in. I thought that maybe I'd hear something in 6 months time, but actually it was barely a month before the tube came out and I got a phone call.

I stuck to my guns and said we didn't want it put back, and flew back to the UK. The nursing home gave her water but slowly she drifted away. Once or twice she seemed to perk up a bit, I've seen that mentioned a few times about dying people. So I'd go in every day and just read out loud from one of her books. And one day, she just died. I knew it had happened, her breathing turned into a slight rattle and just stopped.

Anyway, the message is...I think that tube feeding is inhumane, it can go on for a very long time and it's difficult to stop regardless of the quality of life that is being sustained. So with 20/20 hindsight, I wouldn't have agreed to it starting, and/or would have requested not to replace the tube years before I actually did.

And to answer your question, sips of water, and about 10-14 days.

My darling Dad has terminal cancer so I have been looking into advance decisions and Respect forms, palliative care etc and thinking about things like this.
To me it sounds like at 88 after a significant stroke it may be coming towards the end of his life. I would be respectfully declining this intervention.
Wishing you and your Dad a peaceful time together.

Thank you filka and Halfasleep for your posts, it really does help to hear others' stories, even if they're sad ones.

The hospital has withdrawn IV fluids now, but they are offering small amounts of food and water by mouth so dad is still receiving nutrition and hydration, albeit tiny quantities. I fear we may have a long period of decline ahead of us as my mother was like this with vascular dementia and lived for months confined to bed and taking minuscule amounts of soft food and drinks.

I have expressed the wish that this last chapter of Dad's life is as gentle and as swift as possible. I feel as though he has already gone, sadly, because he seems oblivious to everything going on around him. I'm really struggling with it but the staff are very good and supportive. One day at a time, I guess.

@TheSingingBean , I’m so sorry you are having this awful experience with your dear dad. I think a lot of people find it very difficult to understand the point where intervention becomes not only pointless but unkind. Im not sure your dad is at that point but I am sure that you would be doing the right thing to withhold futile and potentially uncomfortable treatment when that time comes. You need to talk to his medical team and be guided by them. Don’t write dad off though because the human spirit is quite exceptional at times. I wish you strength. X

Thank you for your kind words.

Yes, the medical team is receptive and supportive. I am confident now that we are all on the same page. We have agreed no active treatments or interventions, comfort care only. It wasn't an easy decision but I feel certain it is the right thing for my father, and what he would have chosen had he been able to.

My 93 year old aunt has osteoporosis, scoliosis, is blind and can do very little for herself. She lives in a care home where she is miserable and complains constantly. Is waiting for an extra care flat but had deteriorated so much I am doubtful it will now work out. She has had pneumonia in both lungs twice since January. Both times she has been taken to hospital, x-rayed, scanned, and treated with IV antibiotics and turfed out back to the care home where she has never fully recovered. Has had numerous further courses of antibiotics to try to shift the stuff on her chest to no avail. She is weak ,miserable and can do less every week.She has more morphine now to try to deal with the high pain levels from her osteoporosis and scoliosis.

I think they should have kept her in the care home, kept her comfortable and allowed the infection to overwhelm her. It would have been kinder.

We get very misguided as doctors between can and should.

Just because