intensive care

[monty0703]

I have a relative in intensive care who is doing fine apart from still being on a ventilator. They say that she is unlikely to come off but I can't believe with all the technology there is that something can't be done. She is fine apart from that and I can't get my head around them wanting to stop treatment when they try to get her off and it doesn't work. Any advice would be really appreciated. I don't know where or who to turn to. I can't lose her, I just can't.

[sara3]

monty, I think you need to go and have a chat with someone who is in charge of her care. I'm not sure that being on a ventilator is a treatment as such, it's an artificial means of keeping someone breathing. I would therefore doubt she is "fine besides".

I'm sorry, it's a lot for you to come to terms with but I think you need to understand all the facts from her doctors.

[boxtops]

I agree with sara - a ventilator is life-maintaining. It depends what is the matter with your relative. Do you know why she is in intensive care? that alone suggests that her admission was for something serious, otherwise she would have been moved to a ward as she stablised. I am sorry if this is not good news at the moment, but the clinical staff must have good reason for keeping her on the ventilator.

[monty0703]

She had an operation from which she is fully recovered and has been for a few weeks now. they told us yesterday that she has no problems apart from the ventilator. How can we say goodbye to our mum when she is so cheery and bright? what about people who are ventilated when in a coma or vegetative state and the clinicians suggest turning off machines but the family refuse? can't we insist that if she doesn't come off it this time then they try again?

[boxtops]

I'm so sorry, monty - it must be so hard to see your mum like this. You need to speak to her consultant or the team looking after her, and find out more about her condition and prognosis. It will be difficult, but it will help you to understand what's happening. We 're thinking of you. The medical profession do all they can to maintain life - switching off a ventilator is always the absolutely last resort. I cannot envisage that this would be suggested for someone who is alert and responsive.

[sara3]

if she is fully recovered, why can't she breathe?

[monty0703]

Do hospitals have liaison people that relaives can talk to about anything? We don't know where to turn to. I realise the gravity of the situation as my heart has been breaking every second.

[boxtops]

Yes they do http://www.pals.nhs.uk/ - the hospital will have a PALS service. I am dismayed that the clinical team looking after your mum aren't keeping you sufficiently updated though - did you not get a chance to ask questions, when they spoke to you yesterday? Do you think your mum understands what's happening?

[sara3]

all hospitals have charters, procedures and guidelines. there should be posters and leaflets that will advise you, but I'm sure the staff in the ITU would be able to guide you on this.

[monty0703]

Boxtops, she is completely alert and responsive. she's laughing and joking with the staff and when she was 'capped off' the vent, she was eating, getting physio to build her muscles, reading, writing etc. that was 2 days ago! that's why it's so hard to accept that when they actually took the tube out and had to put it back in that they seem too readily to accept that when they try again they will not intervene if she struggles.

[boxtops]

Something must have happened to suggest she needed to go back on the ventilator, it's not something undertaken lightly. Is it something you could talk to her GP about? he/she will be being kept informed about what's happening in this hospital (or should be). I recognise patient confidentiality but the GP might be able to talk to you in broad terms, if you find the hospital staff aren't helping you to understand what's happening.

[sara3]

I need to read up on this.. I thought a ventilator involved a tube going down the throat, so didn't think she's be able to laugh, eat, drink, etc.

[monty0703]

sara, a ventilator does involve a tube going down the throat but when weaning the patient off, they can 'cap' it and deflate a wee balloon in the throat so the patient is breathing as they would normally and can speak, eat and everything as normal.

Boxtops, thanks for the link but there are no offices in Scotland. I googled but can't find anything other than advice on making complaints.

[RATTER15]

Yes sara3 that's confusing me a little, Monty, I have been in this situation a few times, talk to the staff at the ICU, they will almost certainly explain in detail what is going on with your relative, is it an actual ventilator or just a mask to aid her breathing?

[RATTER15]

ok, Monty you answered my question as well. you learn something new every day on her.

[sara3]

monty, thanks.. I didn't know that either.

do you know which NHS Board covers the hospital?

[boxtops]

Sorry monty, I hadn't realised that you are in Scotland. Does this page help?

[boxtops]

^^ http://www.adviceguid...servicesandchartersta

[boxtops]

Monty, this one looks useful, http://www.scotlandpatients.com/ and http://www.scotlandpatients.com/Contact.aspx if it's anything like the PALS service in England, they will be able to point you in the right direction, help and advise.

[Sqad]

Ventilator is either attached to a tube in the mouth (endotracheal tube) or if the ventilation is to go on for a long time, to save damage to the vocal cords, a tracheostomy is performed (hole in the throat) and the artificial ventilator is attached to the tracheostomy tube.

What operation did she have and for what condition?

You need to talk to the Consultant in intensive care for an explanation.

[boxtops]

sqad I am glad to see you, good morning.