End Stage Dementia: Feeding Tubes

[Maxy24]

So this is an unpleasant topic, but I thought maybe some people here may have experience dealing with end of life decisions. My grandfather has lewy body dementia, it's basically a combination of Alzheimer's and Parkinson's disease. He's been in a nursing home for maybe 7 years or so. He has been completely out of it for a few years now-can't have a conversation (even a nonsense one), can't reply to questions, though they may stimulate him to say random words. Doesn't know who anyone is, might not even know that anyone is there. He's pretty much gone, his brain is functioning on a very basic level. Most of the time we visit he won't wake up. If he is awake he just lays there and makes hand motions like he's eating invisible things. He does not make eye contact. He occasionally says a word or short sentence but speaks so softly we usually can't hear. He has not been able to walk and has been in diapers for several years. His organs are all healthy.


Let me preface the next part by saying that I'm not all that broke up about his condition. I met my grandfather a few times as a small child but have no memories of him. He stepped out of my mother's life for the most part about 6 years before I was born and didn't come back until he had a stroke while I was in high school. After he went into the nursing home I learned he repeatedly molested my mom and one of her sisters when they were kids. So he was a scumbag who I have no attachment to. That said, as a dying human who has no idea who he is, none of us want him to suffer an awful death.


He has begun having extreme difficulty swallowing. My mom has power of attorney so is the one who has to make any end of life decisions for him. She has already signed a DNR, but is not sure what to do about a feeding tube. The nursing home is going to try pureed food for now, but if that does not work mom will have to make a decision regarding a feeding tube. She would prefer not to give him one, her brother agrees. Her two sisters do not like the idea of starving him to death. My grandfather's sister will be absolutely furious and devastated if we don't do the tube, it will likely ruin the relationship between her and my mom. I'm torn (not that it's my decision at all, I'd just like the know more since she's asking us all our opinions), part of me feels like he's already living a terrible life and it would be best for it to be over. Putting him through a surgery and all the possible complications would be hard on him. It's his time to go, he has no quality of life. Then a big part of me thinks starving to death sounds like a miserable way to go. If I miss two meals it feels like torture. A few weeks of that? No thank you. I know they put pain meds on board, but I guess my main question is, can they really make you totally comfortable while you starve to death?


Does anyone have experience with someone dying this way or having to make this decision? Any good resources on how to make that decision? I did a quick search but a lot of what I read sounded biased/based on opinion rather than scientific.

 

[BostonBanker]

I'm sorry your family is dealing with all this. Regardless of how you feel about the person or any connection you do or don't have, I know it is stressful.

We haven't gotten there yet, but there has been a lot of talk about similar things here, as my grandmother is dealing with a brain tumor that is already affecting her ability to eat some, and that likely will get worse before the tumor itself kills her. I think she has already said no feeding tube, so the discussion here has been more about choosing to end life via medication versus allowing it to happen "naturally" via starvation. The doctors have assured the family that both can be handled without pain, for whatever that is worth.

From a completely non-medical standpoint, my own assumption is that when your body is shutting down in so many ways, you probably don't feel hunger the same way we feel it when we skip a meal or two.

 

[Maxy24]

I wish euthanasia/PAD was legal here, not that everyone would be on board with that either, but at least you know it's painless. When it comes to the point where death is at hand an overdose seems a lot more peaceful than starvation. But then I suppose the decision maker feels a lot more directly responsible for the death, versus "letting nature take it's course" where he's dying from lack of intervention.

 

[BostonBanker]

Yes, I think we have some family members really struggling with that. Plus some of the requirements make it a little uncertain that it will even be available as an option in our case. The doctors have yet to give her a definite "less than six months" diagnosis, and there is a risk she won't be able to swallow the medication when the time comes. Not that I think it should be easy to do, but it does seem like some of the requirements make things much harder on patients and families than it should be.

 

[joce]

No tube. If he gets it he could go on for much longer. And why??? He is a DNR.

I just argued this with my family about my grandpa. He is not really there. Tube just prolongs it. Let the body die like it's trying.


I have had patients so confused and combative try to pull out tubes. They need restrained to keep them in. It's awful.

 

[Maxy24]

For the record he is not a DNR by his choice, but by my mothers. He did not give any instructions, he refused to talk about that sort of stuff.

So that's the thing, we don't want to prolong his life (or prolong his dying). We just want to ensure it's as painless as possible.

And yanking the tube out is a real concern, he's fairly combative and his hands are always grabbing at something, they have padding on the sides of his bed now covering the bars-not sure what happened there. It would be pretty horrible if they had to tie him down.

 

[milos_mommy]

I wouldn't want the tube if it was myself or a loved one in that condition.

It's not like the feeding tube will make him better, and tbh, starving to death doesn't sound much worse than going through all that, surgery, etc, and not understanding. He'll likely be so out of it that he doesn't feel as much pain/discomfort as you'd expect, plus he'll likely be medicated and sedated.

basically, to me, starving to death while having treatment to make it more comfortable sounds a lot better than living as elderly person with no ability to really live or think at all and have to go through a feeding tube, etc.

 

[katielou]

Just went through this with my MIL who also had LBD.
My husband is a nurse and 100% opted for no tube. She was given pain mess and was gone in a week.

If you or your mom need to chat with anyone about it my husband is available for you.

 

[Kyllobernese]

I wish they would legalize euthanasia for people. When my husband finally went into the hospital for the last time with terminal cancer, it had spread to his brain so he could not communicate. As he was healthy other than the cancer which was in his spine, he had to lie in a bed for over a week before all his organs shut down. They had taken out all the intravenous lines so basically he just starved as feeding him would have just prolonged it anyway.

If they ever legalized euthanasia, I would be all for it in cases like this.

 

[Romy]

There are some different feeding tube options. The gastric tube is inserted surgically, and needs a lot of care. I used to work for someone with a gastric/jejunal tube and it was a constant thing. There was another person that had one too, and he didn't understand why it was there so was constantly ripping it out until the agency got them double staffing and the staff figured out how to redirect him from the tube.

There are nasogastric feeding tubes. They are usually inserted short term, non surgically, can be done without sedation, etc.

Mostly it boils down to what will be the most comfortable for him. Personally, if cutting off his food was going to be the cause of his death, I wouldn't be comfortable doing that. If it was a person whose organs had already shut down and their body was already in the process of dying, it would be different.

Basically the way most hospice care is handled, is they dope the patient up on crazy amounts of morphine to make some of the inevitable pain of dying from these diseases a little more bearable. I guess with enough morphine he wouldn't notice whether he felt really hungry or not.

I'm sorry your mom is having to make these decisions. Especially for someone who abused her so horribly.

 

[stardogs]

Is hospice an option? They would be a great resource at this stage and could give you more info on the ways to ensure his comfort during the dying process. They were a godsend for both my granddad and my uncle as the end approached.

 

[Maxy24]

Thank you everyone for your input. He actually started eating the pureed food alright but then a couple of days ago he had to go to the hospital. He was vomiting black liquid and had an abnormal blood pressure and heart rate. He was having trouble breathing and seemed to be in pain. At the hospital they discovered he was very constipated, like hadn't gone in at least 3 weeks. So they fixed that, but there was blood in his stool and possibly some in the vomit so they wanted to do an endoscopy and colonoscopy. However when they gave him the liquid you have to drink before those procedures he aspirated some (even though they used an NG tube) and got pneumonia. Then he had a heart attack. It is possible with treatment for the pneumonia he could survive but given his general condition the decision has been made to discontinue treatment except what is necessary to keep him comfortable. So now we wait and hope he goes quickly and as painlessly as possible.