My mother, completely dependent for all care-including feeding and other necessities, bedridden, unable to recognize or verbalize, and need advice. My dad and I have cared for her for about 12 years.
Where can I find info on legal matters regarding abstaining nourishment for end of life? I can't seem to find answers anywhere. She can't feed/drink by herself, we feed her. Bluntly, she's just a body being kept alive. She's been choking so much for the last year at least. We feel we're only prolonging the inevitable. It's starting to feel that we might be doing more harm than good and maybe is not fair on her.
She's been in hospice twice but labwork is fine and her body is stable, so she's not on hospice currently.
I know it's taking a big toll on my dad who's 73, healthy but with age related aches and increasing physical decline, as well as mental exhaustion. I'm 42, so I'm ok, but 1 person can't take care of her.
We've discussed and wondered about legal issues with abstaining sustenance but not many answers out there.
Is this even a possibility, legally? We've wondered if hospice would assist on keeping her comfortable while abstaing sustenance. It would sound horrible to call them and say to keep her comfortable while we refrain from feeding/drinking, and who knows, they might call the police thinking we're trying to kill her.
My mental health has also taken a toll, but I'm 42, I'll be alright.
My dad doesn't want a PEG tube and in her condition, I don't think she'd be accepted in any facility, at least not without a tube. It takes her about 2+ hours to feed and drink, with tons of choking throughout (but her lungs are clear.) We have a Dr at home service and they suggested a PEG tube (again dad doesn't want that.) They've suggested hospice but her body is stable, her mind and abilities are gone and bedridden (unable to walk also.)
Sorry for the long explanation. My question is the legality, and if hospice would even keep her comfortable while the process takes its place.
I would be so grateful for any advice on this. We feel it's cruel to forcefully keep her alive, but we also feel it's cruel to abstaing sustenance and let nature takes its course without she being kept comfortable, and of course, legal ramifications.
Thank you all in advance.
P.S. She never left advance directives.
Feeding takes 2 hours, and must be tiring for you and for her. If she stops promptly opening her mouth voluntarily, do you need to continue? Why do you decide that she is still hungry? Are there signs that she doesn’t want to keep going so long? Do you continue as long as possible, just because you think her body needs more? There is a difference between her stopping to want more food after several mouthfuls, versus you making a decision to stop all nourishment.
What do you do when she chokes? Do you need to do whatever it is that stops the choking? Choking is another sign that her body is not handling all the food she takes in. Choking is very unpleasant to cope with repeatedly.
In the past, deaths very often happened because there was no way to feed for hours, no easy puree devices, and no time to watch and then overcome choking. You are trying very hard to keep the lady’s body alive. Perhaps you might just let nature take its course, with her body making the decisions that would happen naturally. Still a difficult choice, but a middle way that might be easier all round. Nothing in my law degree suggests to me that this would be illegal, or even morally abusive. Yours, Margaret
However, you as POA would be able to refuse tube feedings before they start, or placement of heroic measures to feed (PEG placement) under MOST circumstances in a non-responsive patient who has already been on hospice and who is expected to die rather than have any hope of recovery and a meaningful life.
Withdrawing these measures once placed is more problematic. This is why I have on my advance directive refused any and all feedings, hydration by artificial means, IV or naso gastric or PEG placement. Most people never think of this ahead of time, and it is too late after time.
I would reapply for hospice and discuss with them the legal options in your area. If you are withdrawing only nourishment you need to understand people often live a few months without it. Withdrawing both food and ALL fluid is quicker. But again, without the person him or herself directly requesting this we do not starve people to death in most instances in this country.
I am afraid that while you can refuse the placement of tubing you are unlikely to be able to withhold food and fluid without the explicit wish of the patient.
This is a very dicey territory. I would contact Social Workers and palliative care, hospice and an elder law attorney in your area for legal issues in your state.
Do know that feeding someone who is choking will inevitable and eventually result in aspiration pneumonia, and likely death without treatment. Pnemonia was once known as "the old persons friend" because it "delivered" so many to final rest.
Withholding food or drink from a person who isn't in the dying process yet,(when the body starts to shut down and it doesn't want food or drink, as it can be harmful and painful for the person)to me is very cruel and inhumane. It would be a horrible way to die.
My husband started his dying process on Aug. 5th 2020, and stopped asking for food then. I was told by hospice that he would be dead in 3 days. He lived for 41 days without food and over 25 days without any drink,(he died on Sept. 14th) and it was very hard on me to watch him wither away. He was just a shell of the man I knew and loved when he died, and that was with letting the natural dying process to take place. I can't imagine purposely withholding food or drink.
I'm sure that this is hard on you and your dad to see your mom like this, and if it's just getting to be too much for you both, then it may be time to look into placing her in the appropriate facility. Your dad and you may just have to take turns going to the facility to feed her, as that will be easier on both of you than having responsibility for all of her care.
I'm sorry that you're having to go through this. I would definitely be getting hospice involved again, as they can better assist you with keeping mom comfortable. They will not recommend keeping food or drink from her, unless she in fact has started her dying process, and then your mom will be the one to let you know when she doesn't want either.
Blessings to you this Christmas season.
If your mom was able to refuse to eat, that would be one thing. But, as you have described your situation, I would think that yes, an overzealous prosecutor could bring dad/you up on charges if you refuse to give her food; *COULD* being the operative word here. WOULD someone pursue this, for an elderly, bedridden person in deep, deep dementia? That I don't know. If you go ahead with that idea, I think you'll be rolling the proverbial dice - and only you and dad can know if it's worth the risk.
Unfortunately, with no advanced directives from your mom, your dad is in a difficult place. I want to ask, how verbal has HE been with your mom's doctors about her condition? Or is it all you talking with dad sitting there? My mom would clam up the second we walked into her doctor's office, and then complain mightily after about whatever strategy he wanted to try next to prolong her life; but until she decided to go into hospice, she just sat quietly and didn't voice any objections. Doctors always try and prolong life. It's their job, their mission and their purpose. Their oath says in part "first, do no harm" and many (if not most) believe that death is the ULTIMATE harm, so they are - at the very least - loathe to suggest a course of action that might hasten it.
I think, in your situation, dad needs to really, really vocalize what's going on with his wife. It doesn't have to be overly emotional. He should really and truly insist on another hospice evaluation - and Lealonnie is 1000% correct, keep calling if your first answer is "no" - and explain to the "powers that be" so to speak what HE believes her wishes would be in this situation. When someone who is beyond communication and has not left advanced directives, it is normal and acceptable for the spouse to speak on behalf of that person, even before the children do.
I wish you peace in this difficult situation. (((hugs)))
First, people qualify for Hospice if they are determined to have six months or less of life expectancy,, which can be tricky with dementia for sure. Second, I am not a lawyer, but you cannot withhold drink or food, no matter how long or difficult the feeding process is - Hospice will not do so, but if your mother refuses to eat or drink then Hospice will will do everything possible for her comfort, but won't suggest force feeding or a feeding tube either.
So that leaves the PEG question. In a quick google search I found this, which I think is pretty helpful at explaining the pros and cons of using it for an advanced dementia patient (sorry for the long link)
http://www.alzbrain.org/pdf/handouts/HOSPICE%20MANUAL/THE%20CAreGIVER'S%20GUIDE%20TO%20PEG%20TUBES-FOR%20PATIENTS%20WITH%20DEMENTIA.pdf#:~:text=therapy%20to%20avoid%20dying%20from%20pneumonia.%20The%20use,tube%3B%20however%2C%20most%20demented%20individuals%20derive%20little%20benefit.
I hope you, your dad, and your mom can find peace in this extraordinarily hard time.
Don't automatically write off hospice; call them and ask for another evaluation! I know they can be quite ridiculous with their stringent criteria, but your mother is having serious swallowing issues and that alone may be enough to qualify her.
Wishing you the best of luck with a very difficult situation. My heart goes out to you. Sending you a hug and a prayer for a good resolution.