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Withdrawal of Care

My Great Aunt, who is 94, has had a massive stroke.

She is a lady who was in a nursing home, with all her mental faculties intact, but who couldn't walk due to being paralyzed from her knees down.

She did not want her heart re-started, should it stop.

She absolutely can not tolerate discomfort. Of any kind.

So this afternoon as I watched her struggle to breathe, and as her only living relative and power of attorney, we had a "family meeting" where I was explained the extent of her injuries, and I was asked how I would like to proceed.

She's had a massive stroke on one side of the brain paralyzing her completely on one side.
She's aspirated, and now has aspiration pneumonia.
She now has a UTI from the catheter they tried to insert upon arrival at the ER.
It looks like she has a pulmonary embolism.
Her heart is no longer working at a proper rhythm, because it's been working too hard to help her breath.
Her lungs are filling up with fluid faster than they can suck it out.

My response was that I did not want her to suffer, and that I wanted her care to continue for as much as it needed to aid her comfort. They indicated that the next level of care would be to send her to the ICU where they would do life-saving measures. I told them I did not want that - I just wanted for her to remain comfortable.

They couldn't feed her through the feeding tube, because she would just aspirate, and her lungs can't take any more. I told them to take it out. She would be more comfortable. They expected it to only take 12hrs, to maximum a week for her to die. She was scared. I could tell she was scared, because when I said her name and told her who I was, she tried to open her eyes, and she reached out and grabbed my hand. They were going to suction her out so her breathing would be a bit better.

She was moved to another room, another unit, and was definitely breathing better after the suctioning. I sat and waited for my mother to arrive. In the meantime, my aunt was spontaneously moving around, trying to adjust her covers. She tried to pick the tape off of her hand - it appeared to be bothering her. She wouldn't respond to my voice, but she was definitely not completely out of it.

They had this machine forcing O2 down her throat at a really high pressure, because her O2 saturation was pretty low. She started to claw at the mask, because it was cutting into her face. I had them take it off and replace it with a normal nose tub, rather than the full face mask. It made her seem more comfortable. I thought I saw her swallow after she coughed - they had told me she couldn't do that. Then she put her hand to her mouth as she coughed. Reflexes? That sounds like a bit more.

The doctor came in and asked about the i.v. I thought about it. My dad had been horribly uncomfortable in the end, due to the dehydration. He had shriveled up like a prune, his eyes were dry, his mouth was dry, his lips were cracking, and he desperately wanted water but couldn't swallow. I told them to leave the i.v. in. The doctor was ok with that.

I went to the bathroom, checked my email, and called home. I returned, and found, much to my surprise, that the i.v. had been pulled. My mother got there, and asked why everything was stopped. I wasn't sure - no one had said anything to me about stopping the antibiotics and the i.v. - in fact I had understood that was to continue. We called the nurse.

The nurse explained that she was CTC - Comfort Terminal Care (I think?) - which meant no food, no water, no meds unless it was to make her more comfortable.

Except that our "family meeting" didn't exactly include a definition of what all we would be withdrawing.

When I asked the nurse if there would be a problem with restarting her i.v. the answer was, yes, but it will pro-long her life. I asked her if the antibiotics were making her more comfortable. She thought about it and said that they probably were. My mother pointed that without the antibiotics, the dying of pneumonia would be similar to how we watched dad die - slowly drowning and struggling to breathe. The nurse then went on to tell me, that we have a window of opportunity here, where we can let her die. And if we do too much, then we'll lose that opportunity, and she'll go to a nursing home, where she'll probably last at least another 18 months. So do we really want to re-start this i.v.?

Withdrawing care, is obviously going to result in some serious suffering, especially considering how she was going. As would be waking up to the reality of being a stroke victim. What an impossible choice.

Somehow, we went from her dying in the next 12hrs-1week with care, to her lasting another 18 months, so maybe I should starve and dehydrate her to make sure she dies faster.

Suddenly, this is looking a lot less like trying to keep her comfortable, and it's starting to look a whole lot more like deliberately killing her.

Suddenly, I'm feeling much less ok with the decision to withdraw her care. I was ok with making her more comfortable, but I'm not ok with actively doing things that will kill her, or result in her death.

I find it ironic that it's completely illegal to give her an overdose and end it that way, but it's completely legal and acceptable for me to stop giving her food and water.

I don't know how the fuck people are supposed to make these decisions.



( 16 comments — Leave a comment )
Nov. 11th, 2010 04:46 am (UTC)
My grandpa was like this in the end. His body was too strong to die and they would never withdraw care completely. He lasted 4 years past the point they thought he would.
Nov. 11th, 2010 04:49 am (UTC)
It just feels completely wrong to completely withdraw care.
Nov. 11th, 2010 05:39 am (UTC)
I know. I don't know how my mom and her siblings dealt with it.

Also: <3
Nov. 11th, 2010 05:26 am (UTC)
Oh, honey. *hugs*

One of my best friends went through this with his mother last year. You can only make the best decision that you can, honoring what she wanted and what you can live with.

I am sending a lot of love and acceptance and strength your way.
Nov. 11th, 2010 05:44 am (UTC)
It's a horrible situation to be in, but to have the nurse come out and say that...
When my Dad was on his way, they withdrew the food tube even though it wasn't bothering him at all and it bugs me to this day.
Massive hugs to you ♥
Nov. 11th, 2010 06:33 am (UTC)
It sounds to me as if you're doing very well. You have already decided to preserve comfort. You do not wish to cause her death. What else is left to decide?
Nov. 11th, 2010 01:24 pm (UTC)
It's not ironic that you can't give her an overdose it's inhumane.
At work when an animal is beyond help and suffering we are allowed to give them the final gift.
I feel so bad for you Shar <3
Nov. 11th, 2010 03:05 pm (UTC)
So sorry to hear you have to go through this. I guess all you can do is try to think what her wishes would be in this circumstance. Would she want all possible comforts right now, knowing that it might prolong her life in a manner that might be much less than what's she's known? Or would she rather accept the discomforts and let the inevitable take her now? I'd probably be in the latter group, but that's me.
Nov. 11th, 2010 03:27 pm (UTC)
For what it's worth, food is not a good thing for an actively dying person - it's hard on their body, because the body starts to shut down digestive processes at end of life. A lot of people feel like they're doing something unkind or inhumane by withholding food, but it's really not - trying to feed them just adds to discomfort at that point.

Can you get hospice services in there? Hospice will care for both your grandmother and your family. There are standard medications for hospice care that include anxiety meds, painkillers, meds that dry up secretions, etc., to keep her comfortable and calm. Hospice personnel are very good at helping patients and families with end of life care, and I can't recommend them enough if it's an appropriate situation for it.

My sympathies to you in this difficult time.
Nov. 11th, 2010 08:59 pm (UTC)
(hugs) Thinking of you. xx
Nov. 11th, 2010 10:54 pm (UTC)
*hugs* It's such an impossible position to be put in :( I'm sorry you're going through this and that the bulk of it is falling on your shoulders.
Nov. 11th, 2010 11:39 pm (UTC)
I imagine a lot of people are able to make these decisions because they don't know what they entail. They probably think that body just quietly and painlessly fades away, not that the person starves and is thirsty in the midst of it.

I'm so sorry that this is happening.
Nov. 12th, 2010 01:06 am (UTC)
Nov. 12th, 2010 03:29 am (UTC)
I'm actually, as we speak, writing an argumentative paper of why physician assisted suicide should be legal. All I've got is.. *hugs*
Nov. 13th, 2010 04:09 am (UTC)
I don't know if this will help you are not but I thought I would share. My nana wasn't ill when she decided to give up, she was just tired of living. She had done all the traveling and said all her goodbyes and then just stopped eating and drinking all together. It's not something I share with alot of people but the dead can speak with me and though she wasnt dead, she would lie in her hospital bed inbetween what appeared to be a sleeping state and yet at times she would respond to what people were saying within the room with facial expressions. So I sat at her bed side and consentrated on her and found that she allowed me into the space she was existing. There is a world in which they create the most peaceful of places somewhere in the inbetween for their souls. Their body may sometimes react due to the nerves however they are free of the pain- it is the place where they have time to reflect and yet they can also hear the people around them. there is no right or wrong if you decide to put her on liquids- but I can imagine that if you and the rest of the family go to her and take the time to tell her individually that it's okay for her to move on & that you can accept her passing with a since of happiness for her -she will come to know that things will be fine when she lets go as I believe her worry right now is how people will handle it if she does go. She doesn't want to let anyone down as she is the type who worries more about other people than herself.
Nov. 17th, 2010 12:20 am (UTC)
God, that's awful. I'm sorry.
( 16 comments — Leave a comment )

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