My brother has just suffered a very serious TBI and has been given a terrible prognosis so we have signed a 'DNR' order.
We have stopped antibiotics so that his eventual cause of physical death will be succumbing to an infection, most likely pneumonia. We could also withdraw his anti-epilepsy drugs.
My question is: If he had an epileptic fit, would he die from it? If so, would it be kinder to him to die from that as opposed to pneumonia? I've read that dying from pneumonia is like drowning...
He is in a deep coma and as far as we are aware, cannot feel anything, so hopefully he would not be aware of anything that is happening to him.
Many thanks for your advice.
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sisteralice
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THIS IS SUCH A TRAGEDY, I'M SO SORRY. IT'S SUCH A PERSONAL DECISION, MAYBE HAVE A PRIVATE CHAT WITH HEADWAY, THEY MAY BE ABLE TO OFFER SOME ADVICE THAT YOU DON'T NEED TO SHARE WITH ALL & SUNDRY.
Such a painful, dreadful time for you Alice ; I am so sorry about your situation.
I agree with Zeblet that Headway will be able to give you the best advice regarding this critical dilemma with your brother. Please contact them ; they have experts who can answer your questions better then anyone on the forum can.
Headway helpline Tel.no. is 0808 800 2244 9am-5pm.
Thank you very much for responding Zeblet and cat3. I took your advice and spoke to Victoria on the helpline who was brilliant and answered my questions.
This is such a difficult dilemma to comment on, my husband was asked twice to put DNR on my notes as the prognosis for me was so dire, yet here I am two and a half years on, having recovered far better than any one could have imagined.
Needless to say it did not come to them having to action said DNR, my husband was adamant I should have every opportunity of recovering.
Apart from some balance issues and sight impairment my executive functions are improving all the time, I can look after myself independently and go out on my own, I was 59 when I was in a coma for 3 weeks with a GCS of 3, it has not been easy but if I had had antibiotics and the like withheld I doubt I would have recovered.
I know this does not mean your brother would recover as I did, I'm just relating my experience to show that they don't always know the likely outcome, doctors I had never met came and shook my hand before I went off to rehab.
I've probably not made your dilemma any easier but think long and hard, I was expected to be in a PVS and nothing could be further from the truth.
Good luck with this I send my support to help you at this time Love Janet xxxxxx
Also whilst in the coma I remember snatches of things that were going on around me, my family put my iPod on me to stimulate me and also played recordings of my son reading to me, I remember some of the stories and snatches of conversations that were going on around me, I know I was in hospital being cared for, I remember my husband telling me.
Your hearing is the last to go and my husband recognised I was making the basest of reactions even when the doctors and nurses were adamant I wasn't. Janet xx
This is all very traumatic to recollect but is very true I can assure you, be sure you have made the right decision with all the facts at your fingertips.xxx
I'm really sorry to hear you've had to go through such a terrible ordeal but so pleased to hear you are doing so well now! It certainly makes you question your decisions when you read a story like yours.
My brother is still in a coma after 4.5 weeks though and has brain damage all over his brain, including his brain stem and the part of the brain that drains fluid. A car smashed into his head at 95kph. His condition is worsening, not improving. That said, there is of course always a chance anyone can make a good recovery, which is what makes this such a dilemma. We need to base our decision on the likelihood of that happening however, and we also need to be very careful we don't bring him back to a state that is halfway between life and death, because he would not want that.
It's very interesting that you remember hearing snippets of what was going on. Although this worries me too. Do you recall being in any pain?
Hi Alice, no I don't remember any pain. I had encephalitis so there was no trauma to my brain other than swelling, that has caused two lesions in my brain and I was in a coma for 3 weeks, having to be taught to walk, write, feed and care for myself again. I had a tracheostomy and was fed by peg for the best part of 2 months. I know I have been lucky, I have been like a child re- learning and making new pathways in my brain to take over from the damaged ones. I also have some nerve pain in my arms but nothing that can't be coped with.
I am aware that your brothers injuries may be far more widespread than mine, I know it must be a difficult situation for you. But my outcome has far exceeded what the original prognosis was, I shudder to think how different it would have been for me if my husband had listened to what was told him.
I am sure that the decision you make will be the right one and that you will have done much soul searching in that decision.
Best wishes for the future whatever it holds and keep us informed if it is not too traumatic for you.
Sorry, back again, I had damage to the cerebellum and my optic nerves have some damage, although my eyes work fine the connections in my brain are not quite right, consequently I have lost some peripheral vision and detail
On the whole, I have worked hard to recover the best I can and am still hopeful there will be improvements xxxxx Janet
Whilst in rehab I saw many people with TBI's of differing severity and realised at that point, life is a lottery and is not fair, I am sure your brother and the rest of your family have not deserved to play with this hand you have been dealt, but my heart goes out to you take care xxx
Sorry, back again, I had damage to the cerebellum and my optic nerves have some damage, although my eyes work fine the connections in my brain are not quite right, consequently I have lost some peripheral vision and detail
On the whole, I have worked hard to recover the best I can and am still hopeful there will be improvements xxxxx Janet
Whilst in rehab I saw many people with TBI's of differing severity and realised at that point, life is a lottery and is not fair, I am sure your brother and the rest of your family have not deserved to play with this hand you have been dealt, but my heart goes out to you take care xxx
Hello sisteralice, my youngest brother passed away in July from a brain tumour which we knew to be very aggressive so nothing could be done.
My SIL bless her ran it past both myself and my other brother about signing for no resus.
My brother continually fitted towards the end but was given meds to reduce the size of his fits although they couldn't be stopped altogether.
I think we can only 'be there' for the person we are losing.
The doctors will keep them pain free and comfortable.
We took it in turns whilst he was in the hospice so someone was always with him even though he appeared to be asleep.
On that morning when SIL got her 'call' I took her and her daughter to the hospice where they sat or lay by his side talking to him.
How much he heard we will never know, but they were told that he was at the latter end 'brain dead' so he wouldn't have heard them or probably felt anything anyway.
it's just a matter of the organs shutting down.
I wish you well in the weeks to come, just be strong and be there for your brother. xxx
I don't think an epileptic fit could cause death, unless the seizure caused damage to the brain stem, thus stopping the heart. How long has he been in a deep coma? People have reawakened from comas even years after going into one. Still sometime physicians tend to place extremely grim prognosis's on people who have sustained a serious head injury. If he is currently in a coma, who has any idea if he is conscious or not, but as long as he is properly being cared for, he is probably not experiencing any pain in his coma. I understand the want to remove your brother, from any possible pain, but why try remove antibiotics, and seizure meds. Doctors maybe encouraging that, in order to free up hospital space. Although after my injury, I didn't go into a coma, my family were told to expect the absolute worse outcome. This is what most physicians do. When they can't figure out how to help a patient, they frequently will give up on them. I would probably seek out some additional physician opinions, before making your conclusion.
I just read some more about your brother. Only 4.5 weeks in a coma, may not be long enough time to know his prognosis. Although I didn't go into a coma, completely on my own, I also suffered global damage, and was placed into a month long drug induced coma. I do not recall, feeling any pain, or remembering any conversations that were taking place, like Janet. Still the reason may well be because at the time, my short term memory was so severely damaged by my anoxia. I understand that whatever decision you make, will be a hard one. Still don't let 'doctors' rush your decision, or make it for you.
My mother suffered a TBI at the end of August last year. We were also given a grim prognosis. Mum was on life support for two weeks and in a coma for a month and a half. We were told if she woke up she wouldnt be able to speak, but she spoke. We were told she would likely be a cabbage (brain dead) but she was aware of lots going on around her.
I whispered loving and reassuring things to my mother every day until she opened her eyes and one year on she is still making progress having gone through another emergency op etc.
Everyone is different of course but we didn't feel it was our choice to make that decision it was our Mums. She has fought the battle ever day since her accident.
I just wanted you to be aware that despite the prognosis it is still possible for miracles to occur.
Dr and surgeons for all the amazing things they can do don't always get it right.
I wish you and your family all the best in this terrible time
I feel so sorry for you-it's the most horrendous thing you can go through.
I tend to think that on the whole Mother Nature will lead you along the path but as you have already seen by the above replies miracles do happen. My OH had a terrible prognosis (coma for about 6 weeks after TBI/car accident )
went through embolism and mrsa to add insult to injury but survived and functions amazingly so dont beleive all what the medics say. x
I am so sorry to hear that and i can't say about if, he would die from an epileptic fit maybe ask the doctors advice. You keep strong and yes he probably wont be aware, and dont feel bad. you have done what you think is best for him. I am thinking of you at this sad time. Life is rollercoaster and decisions we make can effect the rest of our lifes. But i am very sure you made the decisiion with your brothers best interest at heart. And whatever your brother will love you the same. And will be at peace xxxx take care. And if you need to talk i am hear.
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