What would you do if you were in this situation?
I ran into an old friend of mine this afternoon. We were catching up on each other’s lives. She said that her mother died not long ago.
Her mother had late stage Alzheimer’s disease. She was living in a nursing home and was receiving hospice care.
My friend said that her mom no longer spoke and was bed bound. She started choking and she hated the thickener placed in her beverages.
Her mom was a pleasant woman who wasn’t being stubborn. Her mother never liked any thick beverages even when she was healthy. She hated milkshakes because they were too thick for her liking.
My friend was upset. She asked the DON about putting an IV in to hydrate her.
The DON said, “Sure, we can do that if you remove her from hospice. But then what? What’s next? A feeding tube?”
My friend said that her mother had made it clear early on that she didn’t ever want a feeding tube.
So, the DON said, “Then why do you want to place an IV in her? It will not fix anything. It will only prolong her life and your mom doesn’t want to eventually end up with a feeding tube.”
My friend had a lot of respect for this DON and thought that this was the right decision because it honored her mother’s wishes.
She said that it was hard to deal with emotionally even though she was at peace with her final decision.
I was very sad about what my friend went through at the end of her mother’s life.
I told her that I supported the DON’s advice and how she handled her mother’s final days.
As I was driving home I couldn’t help but feel like I would have never wanted to go through what she had been through.
My mom never experienced Alzheimer’s disease or the swallowing issues.
Mom had Parkinson’s disease and some dementia. Mom told me the same thing as my friend’s mother told her, that she didn’t want a feeding tube if she was dying and to allow her to die.
Of course, I told her that we would honor her last wishes.
I am grateful that I didn’t have to make this choice and that my brothers and I were all in agreement about honoring mom’s last wishes, so I knew that there wouldn’t have been any arguments between us.
I have seen arguments between family members about how to handle end of life issues. It’s so stressful.
Even if only one person has POA, they still endure the stress of being harassed by their siblings which is a shame.
Do you feel that the DON at my friend’s mother’s nursing home handled this situation correctly? I do.
I wonder if most DONs give the advice that my friend heard or if they follow the family member’s wishes due to their emotional state.
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You bring up an important point about ‘dying’ not always being openly discussed by staffing.
It is extremely important to discuss what happens so family members can prepare for death.
I think most people know when death is near and welcome it. They are tired of suffering. My mom was ready to go long before she died.
My friend was grateful that the DON at her mom’s facility spoke truthfully to her.
She said that facing her mother’s death was an emotional time for her, but she felt more prepared to accept the fact that her mother was near the end of her life.
I remember when my mother was receiving hospice care, the social worker gave me a booklet to read about death.
The social worker told me that she was there to support my mom and family members by discussing any concerns.
My mother specifically told me that she didn’t want a feeding tube if she ended up having difficulty with eating or drinking.
I really have not researched how often this situation occurs. Doctors don’t have the time to discuss all of the possible health concerns that could arise with aging.
My parents died without any swallowing issues. So, I don’t know how common this situation is.
I don’t know if the swallowing issue is related to aging, dying or a person’s individual health issues.
Mom was 95 when she died and dad was 85.
I remember mom’s doctor asking her if she was having trouble swallowing at every doctor appointment. Also falling.
I am 68 years old and my nurse and doctor started asking me if I have fallen at my doctor appointments. The first time I heard this question I suddenly felt very old! Hahaha 😝.
The choking issue must be frightening to people who experience it. I’m sure it’s very frustrating for the family to deal with as well.
I didn’t have to deal with any thickening ingredients for my mom or dad.
I think you are right.
Nursing homes have focused on the comfort of their residents over delaying the inevitable. These people will be dying fairly soon.
I think about my brother who is only 60 years old with Alzheimer’s disease. His doctor decided to try Memantine. He could end up living in a facility at a much younger age than most residents.
My friend knows someone who was diagnosed with Alzheimer’s disease at age 58 and she ended up in a facility in her sixties.
In my experience everyone involved in elder care from the home care PSWs to the doctors to the nursing home staff seemed to operate without ever acknowledging the huge elephant in the room, that the end of life was approaching. A huge percentage of people in nursing homes are there for less than 3 years, the indisputable fact is that everyone dies there and these are essentially hospices, and yet nobody ever openly talks about death and dying.
I would assess each treatment or intervention. Asing;
Is it futile?
Does it add burdon?
Does it add comfort?
Re: swallowing issues
If the person really dislikes thickened fluids so avoids & is getting dehydrated, I think keep trying other types eg milkshakes, juices, thickened soups, thickened icecream, apple sauce. There may be something they like..
If not, the choices are keep dehydrating (sadly), IV therapy or normal fluids (but accepting the risks).
IV therapy (as the DON said) could lead on to a feeding tube. Futile.
Adds burdon. Possibly painful & restrictive having an IV in place.
Offering thinner fluids is a decision that the family can make - it *may* satisfy the person with Alz BUT the family must accept the real risk of aspiration pneumonia.
For me, saying now (hyperthetical) it is simple.
Thickened drinks, many types.
No IV. No feeding tube.
Comfort care.
When I first spoke to the surgery I told him we'd decline the surgery.
When I told this to the sister and my cousins, they put up a huge emotional stink even though I walked them through the likely outcomes (hospital delirium, UTIs, no compliance with PT, being bedridden the rest of her days, etc...). So I relented and called the surgeon back to tell him we'd go through with the surgery. He was very shocked and in disbelief and I told him it wasn't me who wanted this. He was 100% honest with me when he then confessed that she was a guaranteed failure either during or after surgery and it would impact his "track record". Don't be horrified by this, this is a thing doctors and surgeons actually think about -- they just rarely say it out loud. But he was correct: she was certainly not going to have a better quality of life or have the same quality post-op, if she made it that far.
It took my other relatives a while to come to their senses, but mostly because they were told that if she didn't have the surgery and if her pain was managed and she could comply with PT to pivot on that leg, she could go back home. And the family agreed to this. They were the ones living with and caring for her daily, not me.
As it turned out she continued to get out of bed in the rehab facility even though she couldn't stand, let alone walk. While still in rehab she passed peacefully in her sleep shortly after all this transpired, probably from a clot.
So, I DO think the DON handled it correctly. S/he gave the most likely outcomes to the family based on knowledge and experience and pointed out that they were just delaying the inevitable -- and not by much. That's as much as one can do.
So many emotions happen when the end of a life of your loved one. Then you get a group of people that are related but all have different emotions, thoughts and feelings it's a recipe for disaster. Specially if someone in that group of people is not very emotional mature to be able to separate the feelings of wanting there loved one not to die and wanting to respect the loved ones wishes .
My dad's DNR on the fridge, disappeared during his transition.