Important article re: significant risks of hospitalization/ER for PWDs

ButterflyWings

Posting on both sites. This corroborates the experiences many of us have had with hospital or ER intervention causing more harm than good for our PWD LOs.

The study focused on fainting or near fainting (syncope) as a reason for the initial hospital contact, but the overarching statements caught my attention and are why we are comfort care-hospice only. Especially at current late stage, but even before this.

"...there are known significant risks associated with hospitalizations for patients with dementia, including prolonged lengths of stay, immobility, falls, protracted delirium, accelerated cognitive and functional decline, institutionalization, and an elevated risk of rehospitalization.12–19 In addition to longer-term adverse outcomes, patients with dementia are at increased risk for an “intervention cascade” while hospitalized. With advancing stages of dementia, an increasing majority of patients’ and their family’s care preferences prioritize comfort and more conservative management that aims to limit intensive diagnostic evaluations and invasive interventions.20–23"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156993/

Nowhere

This is an interesting research article. My husband is in a nursing home memory care and is considered to be in advanced dementia even though he still walks, talks, and is continent. He has lost more than ten pounds in six months and so the nursing home has supplemented (without notifying me) a fortified pudding and/or milk to be served with each of his meals. He is also still on blood pressure lowering medications. I do not want him to suffer pain or discomfort, but I do not want him lingering in drawn out advanced dementia stage, either. What do others here do regarding fortified meals and prescribed medicines at the late stages?

SSHarkey

We allowed Ensure for my father, since he wasn’t really eating that much. It kept him from being hungry but didn’t slow down his decline. It was more a comfort thing. He would drink the chocolate flavor.

midge333

I struggle with this because decreased appetite, swallowing difficulties, and weight loss are part of the terminal end of dementia. I would never deny food/liquids if my LO was hungry/thirsty but I certainly would not force feed or place a feeding tube. I think hand feeding becomes a slippery slope to force feeding. That said, I would hand feed if my LO was hungry and wanted to eat.

ButterflyWings

Definitely I would not tube feed, intubate, transport to ER for anything that I can imagine at this stage. If he broke something, heaven forbid, then I guess that's likely the only thing I would see a hospital for, ever again. That's why DH is on hospice. DNR, DNT. No point especially with the added "known risks" and typical complications the above article highlights.

Like @midge333 I also hand feed DH but if he ever starts saying or signaling "no", I won't force it. He actually can still handle the spoon but has a wicked tremor and sometimes splashes puree over me, him, the wall, and clothes so it is easier to feed him.

At this stage feeding him fortified nutrition is not going to unduly prolong the inevitable because at some point the body stops absorbing nutrition even if he never starts declining food. His swallowing issues are moreso pocketing chewed foods (after chewing a mouthful for literally hours) and then aspirating after falling asleep with his mouth full and waking up only to inhale something not intended for the wind pipe.

I agree with our hospice team's continued use of his oral meds (for chronic breathing issues) including giving oral antibiotics when needed for a UTI. For now, I probably also would use oral antibiotics for pneumonia if he ever did get aspiration pneumonia. No more injections, IVs, elective procedures and such for us, though.

The meds we give now are more to help ensure comfort rather than trying to "cure" him of anything, or prolong this late stage dementia nightmare. The meds are to limit pain, fever, infection turning to sepsis, etc. Basically to prevent unnecessary suffering as his downward spiral continues. I think of it as compassionate care. Very selective and what I would want for myself. Definitely it is what DH wanted, and deserves.

midge333

At some point I would also refuse antibiotics...