"When you hear someone is unlikely to pull through"

My brother was found unresponsive one morning and rushed into hospital. He already had advanced liver disease and had had several hospitalisations in recent months) In emergency,  I asked the doctor to be as honest as possible and they said it was extremely unlikely my brother would be coming out of hospital this time. This is quite obvious to us too.

I feel it is helpful for doctors to be honest when asked because it helps us to prepare mentally. 

However, because this information is not passed on to staff, they are in danger of being accused of insensitivity. 

My brother had lost contact with his daughters because of his alcoholism; but on hearing his poor prognosis, they have come from South London and Bath to see him. Because they have poor mental health themselves they have their support (partners) with them. 

Obviously, they needed time with him as do I, (as the sister), plus my 83 year old mother. We tried to stagger visits, but it has been difficult for us to know what to do as nobody  has spoken to us about his diagnosis and treatment. My brother is quite confused, so he cannot relay this, and again, there are no notes anywhere for the myriad of staff to respond to this information.

One member of staff told my mother to leave one evening while I was getting a drink, but she is very deaf and was upset by what was said. (She does mishear stuff and is very forgetful). We appreciated what the nurse was saying about visiting hours but the issue is this: we know he is unlikely to recover, no-one has sat down with the family to talk about what is happening and why. (I have to constantly reiterate that I am next of kin and to speak to me because of my mother's issues). Due to this lack of clarity of information available, poor communication issues, knowledge of his condition and prognosis and perceived lack of understanding from our point of view. - we are close to breakdowns and a desire to complain.

My brother sounds plausible at times, but as his family, we see him muddling up familiar things and grasping for words he cannot express. We see him in terrible pain, but he is finding it hard to ask for pain relief. Knowing this means he cannot relay what the staff have said to him accurately either.

As a close family member, I cannot tell you strongly enough how distressing this is. I am off work, initially for being with my brother, but also for stress. Families need to know much more than is shared. Keep us in the picture and share important knowledge please. It will help everyone in the long term.

Finally, as the board around the hospital state, good palliative and end of life care are incredibly important. But, at what point does someone say, let's talk about it? It was clear from his stay in hospital over Christmas that his liver cannot repair itself and he was told he was not stable enough for a transplant. Surely, this places him in need of that chat?? He was out of hospital one day after the last event and got into difficulties immediately. He is a quiet person who does not trouble people for anything, but we can see he is not coping. What are we supposed to do? Who can we speak to for help? What is a whole room given over to cancer information, but nothing to advise families or patients in other ways.