Edited to add :
Thank you for the outpouring of love and prayers on us all.
The medical team was very patient and thorough, and gave me the rationale for absolutely everything they planned to do.
The reason that Mark will not receive antibiotics is that the infections he has so far suffered have been of very rapid onset/progress and were not amenable to oral antibiotic treatment, mainly because of his vomiting at least three or four times a day at totally unpredictable times. The vomiting itself does not respond to any medication at all. So absorption this route would be unreliable and ineffective.
Almost all his peripheral veins in arms, legs etc are either completely shot after twenty weeks of constant IV treatment for blood draws, medication, blood transfusions or blood products, or the veins are shutting down fast, which we saw for ourselves.
It was explained to us that the only other option would be face/scalp veins, which would be constantly painful and not very practical in an adult, or putting in a highly invasive central line which carries a multitude of risks because of his marked tendency to haemorrhage due to the almost total liver shutdown.
A central line itself could kill him before any IV antibiotics would have chance to help him........
As his veins continue to shut down, eventually the current medication given IV daily will be withdrawn. But not just yet.
So all in all, I can agree with their position that they do not want to cause him any more pain than is necessary when the benefits would be unpredictable at best, non-existent at worst.
He eats virually nothing, and has not for a long while because of the frequent vomiting and constant nausea, but he does take high-calorie/protein total nutrition drinks which are prescribed for him, and he will continue to be offered these freely.
I can only now bear to write this.
At the lengthy meeting with my brother's doctor on Monday, several things have been formally decided and recorded in his medical notes :
1/ He cannot come home to my mum's, as the only care package we will be eligible for would only allow for 3 X 1 hour visits per day by carers. He needs far more nursing care than this, according to the doctors and especially in view of my mum's age (73) and her own very poor health. If he lived in a different administrative catchment area, we would be able to get a lot more care :-(
His estranged wife is adamant that she does not want to have him back at the marital home under any circumstances.
2/ There will be no more heroic, painful or highly interventive medical measures undertaken.
He is now officially DNR.
He will continue to receive the same high quality nursing and palliative medical care as he is currently, including nutrition, hydration and analgesia.
If he develops major infections, he will only be kept comfortable, not treated aggressively, as he has been hitherto.
And that is it.
We have been told that to continue with highly invasive medical treatments will be an exercise in futility and cause him far too much pain for the vanishingly small benefit they will give him at this late stage in his illness.
Nature will be allowed to take her inexorable and inevitable course over an indeterminate period of time.
My heart is breaking and I feel as if I have personally signed his death warrant by giving assent to this.
My head tells me this is all rational, sensible decision-making for someone whose life is drawing to its close, but he is my brother, and I do not want to accept that his death is both inevitable and so close. I do not want him to die.........
Lord have mercy on us all.