Do challenge end of life care designation

[Kentcarer]

In case this helps someone else. My partner is in a rehab unit. He has severe brain damage but is largely content. He started his 4th serious bout of sepsis on Monday and was critical. Within 12 hrs he was designated’ end of life care’ and all treatment withdrawn but a few hours later I could see improvement. For 2 days the medics refused to check his BP as they said they could only make him comfortable not treat him. On Weds morning he woke up and finally at some insistence they checked his BP which was normal. Treatment then resumed. Yesterday he was smiling and talking a little. Do have the confidence to ask for a review in these circumstances. He could have been left to die as nutrition and hydration had also been withdrawn.

[Nackapan]

Goodness . Enjoy this time ❤ together

[cat3]

That's shocking Kc. .....and I'm guessing your partner's recurrent sepsis was contracted in the rehab unit. I hope his rallying will act as a wake up call for the staff involved.

So sorry you were caused additional (& dreadful) anxiety and I hope every effort is made to keep your man free of infection.

My best wishes, Cat x

[Kentcarer in reply to cat3]

Thank you. He’s contracted it in 3 different hospitals but to be honest he is pretty vulnerable and it’s not unusual. A friends husband with similar brain damage had it 6 times. They did care for him very well once I got the decision reversed and ITU refused to take him as he’s DNR. The rehab team have gone the extra mile as they know and like him . We are all astonished at his recovery ( so far) as are the medics.

[cat3 in reply to Kentcarer]

Hope he stays well and that his progress continues Kc.. x

[Leaf100]

That is shocking, Kentcarer. Good thing you were there to advocate.

Best wishes to you both.

Leaf

[Pairofboots]

Hi, withdrawal of nutrition and hydration, could be seen as unnecessarily cruel and omission in duty of care, proven by his recovery. I am gob smacked! They should be hauled up in front of their professional bodies, and possibly the courts! This potentially breaches clause 2 & 3 of the human rights act, and goodness knows what other statutes!

[Kentcarer in reply to Pairofboots]

Hi POB and thanks for your response. Hope you are OK Yesterday he was watching the rugby! . In their defence his blood pressure was through his boots on Monday , no urine output and he had a seizure. I agreed to their decision on this evidence.

Withdrawal of nutrition does happen in these circumstances. Subsequently I have found NICE say carryon with hydration . It is barbaric.

He didn’t respond to any treatment and had the classic mottling on his skin. The issue was not to monitor him after the designation was made until I pushed for it . He had woken up so they may have done so without the push but I will never be sure. Posted it to encourage others not to accept this if you think somethings not right

[philbou]

I agree with pair of boots

I would be bypassing the pals and going straight to the trusts executive committee and the gmc to make a complaint

That’s truly awful

I wouldn’t be letting the consultant who made that decision anywhere near them again

I hope your partners recovery continues

My very best wishes to you both

[Kentcarer]

Thank you. He’s doing well now.

[Dogsabighelp]

WOW i have no words(well actually i do)this is disgusting but seems to happen a lot.you must challenge the doctors who decided this course of action.put simply,ask to speak with the relevant people and ask them to justify their decision bearing in mind what happened.you could well of been planning a funeral right now and wondering for the rest of your life.ask them to consider this....i get shudders when i think of all the families that are encouraged to remove life support,i have been in this position so i know.tell them they made a mistake,and demand to know what they are going to do about it.remind them that they were wrong.also,if i were you,i would be seeking some legal advice on this matter.p.o.b is quite correct this is a human rights/medical negligence matter.my best wishes please keep the group informed if we can help in any way or even just chat please dont hesitatex