No capacity Relative won’t eat in hospital

[Vapeyvapevape]

We have a relative who doesn’t have capacity and is non verbal (traumatic brain injury last year) back in hospital with what the doctors think is an infection. He is refusing any food or drink, they have tried and failed to fit an Ng tube . What happens now with regard to nutrition?

Would he eat and drink with a member of the family /carer present with him in hospital?
If there's a swallowing issue, they'll have to have another try a placing an NG tube, perhaps with a member of the family /carer present to calm the patient down. Usually patients with lack of capacity/ learning difficulties are allowed to have hospital visitors.

They can sedate in order to place the ng tube, or they can fit a peg if needed.

Any idea why he won't eat? Does he not like the food, is it stuff he wouldn't normally choose?

Could you take him something in he would eat?

We can ask if they think this will help but he doesn’t really recognise any of us so I’m not sure it will make a difference but definitely worth a try.

He normally eats well although he has so little understanding that he shovels far too much in and then can’t swallow it. He always drinks loads from a sippy cup but is refusing any drinks at all . He has had an ng tube before but always pulled it out even with mitts on.

There is a nasal bridle system that uses strong magnets to secure the NG tube. That might be an option. In the short time, they could use IV hydration, but he will need nutrition at some point soon.

I wrote a long post but then deleted it, because it was too influenced by my own experience.
To summarise, all I can suggest is that you should maybe think about what he would want if he was able to tell you.
You might not have ever had those conversations, which is ok.
But, if you have, maybe you should consider following those wishes even if they are against what you feel you should do.
That's the only advice I can give you.
I'm sorry for the situation you find yourself in.

Thank you for replying. It’s been an awful time, when he had the accident and was on life support I think the kindest thing would have been for him to just pass peacefully, but he was taken off the ventilator and continued to breathe on his own . He has no quality of life and it’s really taking it’s toll on our daughter (he’s my ex - it was just easier to say relative and we still got on )

He would absolutely not want to live like this 😢

There is a DNR in place

Does this person consider themselves to have a good quality of life, do they want to prolong their life by eating? Do they have some degree of understanding that by refusing food they will ultimately end up dying?

Ultimately, this is a medical decision for the Consultant in charge of his care. If they feel that his current condition is acute and he could recover from it to a similar level as he went in, and that his refusal of food and fluids is directly connected to his acute condition, they may well decide to give him whatever nutrition is necessary to overcome the illness.

If they feel that this is just a step towards an inevitable decline, they may decide not to intervene and then he would ultimately die.

An example might be stroke care - often patients may have 'DNR, not for antibiotics'. The Dr has a conversation with the patient to explain that the most common fatal condition for a stroke patient is a chest infection. They can be treated with antibiotics, but the likelihood is that they will suffer further chest infections. The patient can choose to ask that antibiotics are withheld, which means that a chest infection would take hold and lead to death.

I'm so sorry that you're in this situation, also. It's terrible and so hard.

@Vapeyvapevape

There is a DNR in place

I would say that forcing nutrition into him probably isn’t the way forward. He may not have full capacity, but he may be aware enough cognitively to know this is the only way he can have some control. It may well be that he will eventually lapse into unconsciousness as a result of lack of nutrition, but if he has a DNR then the doctors would be reluctant to incubate him. I’m a firm believer that keeping people alive come what may isn’t always the best thing to do.

We have no idea if he can think normally, there is no meaningful communication, he will put his arms up when you ask him so that you can change his t shirt and he does a nod if you ask him if he wants a biscuit, but not every time. He sometimes makes a tiny sobbing noise if I have hugged him (sod Covid in this instance) so I think there might be fleeting moments of understanding but other times if you ask him if he’s ok or cold or in pain he just stares at you.

Our daughter keeps asking me what I think they will do for him and I have had the same thoughts as @Lougle and @Soontobe60 that he sees this as a chance to be free from whatever hell he is in , I just don’t know how to gently tell her.

She’s a young adult .

In his moments of lucidity, can you ask him what he would like to happen?

Hello Vapey. I'm wondering to what extent this may be caused by the infection and hence reversible. Is your ex more confused and vague since he's had this infection or is this how he's been since the brain injury? Was he eating and drinking before the infection?

It’s so hard to explain how he is , he’s not ever really lucid tbh so I wouldn’t be sure that he has really understood a question. I think he nods when asked if he wants a biscuit because I hold one out for him and he can see it iyswim , but I have asked if he wants a yogurt for example and he just stares at me. It’s so bloody awful.

He was eating and and drinking before the infection so maybe he just feels so poorly that he he hasn’t got an appetite.

It breaks my heart to think he was feeling unwell but couldn’t tell anyone, we’re relying on the hospital communicating to us how he is (no visitors allowed) but they don’t know him and what his ‘normal’ is .

I'm a dietitian. In this situation I would expect that the decision would likely be:

1. Try to encourage oral intake as much as possible and see if this improves as infection hopefully comes under control. I know he's not eating and drinking at the moment but sometimes doctors can be very optimistic and they may also have an idea of how he's likely to feel over the coming days.

They may supplement fluids through tubes in this case (into blood vessels or under the skin).

1. Reattempt an NG tube for feeding and fluids, possibly with a bridle to secure it more as others have said.

Although as a dietitian I would consider all options and have an opinion as to which I thought would be best, technically the decision is up to the medical team. I would expect them to want some background information from NOK (is this your daughter?) before making any decisions about withholding treatments - I'm not including not trying an NG tube again in this category here though. This much be such a difficult situation for you Vapey. It may be helpful for you and your daughter to try to make an appointment with the team treating him to discuss further, and, as you say, explain what his normal is and how he may feel about it.

Thank you @TweeBee the consultant was meant to call yesterday but didn’t, have spoken to a nurse today but she didn’t know much as he isn’t one of her patients.

Sometimes no treatment might be for the best, and that includes not forcing the issue by feeding. It may be time to let them go?

I agree, this is no life for anyone.

It’s so hard when this isn’t the normal course of events , he’s not that old and under normal circumstances would maybe have another couple of decades to live.