Friday, September 11, 2009

Difficult Decisions

My grandfather has taken a turn for the worse again today and is back on some kind of pressurized oxygen mask rather than just the cannula. He is alert and as intelligent as always in his life. He has a living will and did not want to be intubated at the end of his life, but right now he's conscious and cannot breathe well at all. His O2 rate drops to under 90% within 30 seconds when it's removed briefly for him to try to eat a bite. If an emergency happens, does he want to be intubated again? Right now, his answer is yes. That's what he told my grandmother tonight. Others think his living will should stand as is, for him to go naturally, even if that's not what he's currently saying. I'm staying out of this and leaving this to my grandmother and his children and him. I thought the will stood as it was. I feel torn several directions.

I can't say he's irrational at all. He is clear-headed. Honestly, I understand. He loves his family and loves living.

Everything changes when people are in medical crisis rather than hypothesizing about it. I'm told Elizabeth Kubler Ross made some changes to her beliefs at the end of her life. Yes, he cannot live indefinitely but he loves life. How when someone can't breathe can you tell them no, that they won't be intubated again?

Another option is that he could get a tracheostomy and be put in hospice at home. I don't know that he would survive that procedure, would survive full sedation--he's not been able to have needed surgeries because of the risks to him. My friend lives with a tracheostomy, but she is much younger, my age.

This is heartbreaking. It feels like killing someone to deny a trach. People can live with them, though I don't know how much time he'd have without. He lives at home with my grandmother and uncle and is not faded at all, sharp and bright. I don't know what to say, what to think right now. I know disability is okay. I know this. I know trachs (as opposed to intubation where your hands are tied down and you can't speak) are okay. But what would that procedure do to him if a needle biopsy did this? Not giving him air feels like murder. And yet if a trach didn't go well I wouldn't want him to be in agony from that.

He loves my son dearly--I am told if he has a favorite that it's my son--and he hadn't been able to see him in a few weeks. I wish they could see each other again, just once, but those nurses are being strict about no under-12. Yes, my daughter's been in to see him many times. She's okay with this, really okay with this, has been holding his hand.

Nothing about this is easy. I thought the outcomes and decisions would be clearer for everyone. This big grayness is awful. I don't mean to sound like I'm overly distraught--while I've done some crying, I am thinking maybe too much right now. I'm also hating it that my pain has been so high (after a few really good days) to allow me to be at the hospital as much as I'd like to be--for my grandmother more than anything.

Note: I will make myself available tomorrow morning, when they meet together to make this decision, to give an informed lay response about trachs, hospice, etc. if they have questions (I was asked a few).

Umm, oh yeah. He called my grandmother late last night after visiting hours (a nurse can bring a phone in) saying he'd just been given the wrong medicine and felt really funny/wrong and that staff were shouting at each other about it at the end of the hall. I don't know if that's what it was really about or no, and the feeling may or may not have had anything to do with the medicine. But that's when he took a turn for the worse. God, I wish for clarity in all of this. This sucks.


One Sick Mother said...

Oh my! I am sorry your family is going through this. It brings me right back to when my Da was dying. They asked us then if we would take him off life support (to free up the ICU bed), and ...well, I just couldn't do it.

He died the next day anyway.

But to your grandfather: I think it is clear what his wishes are NOW: i.e. he doesn't want to be taken off life support. Yes, he has the living will. But that was made when he was in another place; a place where this stuff was all theoretical.

It is real now, and I think many of us have found that what we *think* we might want is an given situation is completely different from what we actually want if we find ourselves *in* that situation.

You grandfather is in that situation now, and he is compis mentis.

So IMHO, you should respect his *current* wishes and go for the trach.



FridaWrites said...

Thanks, OSM. I think you're probably right and this may be what's done. We went with my other grandfather's wishes at the time when he passed away (he did not want a feeding tube installed and made that decision himself).

I have printed out information on trachs/ventilation (including what it looks like and the care required if they ask questions about that) and hospice and will take that with me tomorrow--they understand what happens if they turn it down (he dies), but the other options are unknowns to them.

FridaWrites said...

And that's awful they just wanted to free up the ICU bed.

We're also dealing with overcrowding right now--he had to wait down in ER for a long time to get a place in ICU, then waited in ICU for two full days to get a regular room--now this. People in the ER were on gurneys in the hallway. I think we're not going to that ER if we have anything happen to the rest of us--I thought when they expanded this would be solved.

yanub said...

Why does it matter what his living will says? That is for if he wasn't able to make his wishes known, if he was already unable to communicate. But he was quite clear about what he wanted before the hospital's medication mix-up. They need to try to get him back to how he was before they screwed up. If they can't, then it will time to think about that will. But now seems to be jumping the gun.

I am glad your family has you and your experiences to draw on, and that they trust you as someone who has insight here.

FridaWrites said...

Thank you, yanub. I think you're right, and he has made himself clear. I felt really annoyed with my aunt calling my mother on the phone and reiterating in strong terms what my grandfather said he wanted--because she didn't add what he wants now. My mother came up there to the hospital. My grandmother wants to include my uncle in the decision too, and I'm glad for that.