Wednesday, July 29, 2009


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As his veins continue to shut down, eventually the current medication given IV daily will be withdrawn.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.
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Meg said...

Haven been wondering how all this was playing out -- I was pretty sure, from your earlier posts, that it would come to this. You, your brother, and all your family are in my prayers -- I hope that God will bring you a measure of acceptance over this, hard though it is. You might try talking to the Theotokos about it, who also had to sit by and give assent to seeing Someone she loved die...

magda said...

I am so sorry you are hurting.

I recently read Madeleine L'Engle's Crosswicks Journal series, and thought of you, especially in Two-Part Invention (I think).

"Death is the enemy," and yet, Christ has trampled down death, fighting (victoriously) to keep us with Him.

I wish it didn't hurt so much.

Praying for you and yours.

Laura said...

God bless you and your family as you travel through this difficult path. I wish I could give you a hug in person!

elizabeth said...

I am sorry to hear; that is really hard. I will continue to keep you in prayer and your brother. Lord have mercy during this time.

*Hugs* love and prayers.

Anastasia Theodoridis said...

That's what they did to my father and my sister, so I have very recently been through the pain you are now feeling, and I cry with you and pray with you.

And my opinion is they should at least administer antibiotics to treat infections; how invasive can that be? Just an IV is all it takes, maybe not even that, if the patient can still swallow pills. They didn't give them, though, for my dad, and they didn't for my sister, and now it looks as if they won't for your brother, but if I were in your position again, I'd ask why not. In fact, I think I'd insist they at least give the antibiotics.

At least they've agreed to keep him fed and hydrated; that is more than they did for my sister or my father.

DebD said...

I can't imagine how incredibly hard this must be. prayers and hugs for you.

Michelle M. said...

My heart breaks for you, Elizabeth. We went through something similar with my grandmother when she had cancer; so I am somewhat able to understand what you are going through. I will continue to pray for you, your brother and the rest of the family. I send you all my love!

Mimi said...

Oh, oh, oh, dear Elizabeth. I'm so sorry. Hugs and love and of course, continued prayers.