A big issue medical system side are basically absent family who only show up for end of life. A lot of folks threatening lawsuits etc. Few folks willing to pay much to make anything better - lots of asset transfer games. It’s usually but not always the most absent family members who get the most upset at those who are helping toilet someone etc. This has nothing to do with OPs point except there is frustration on both sides , and folks living far from family and/or being heavily into the rat race may be a contributor as the med system try’s substituting for large tight knit family and social structures that have been diminished
People get upset because when they do take time off work, find someone to petsit/babysit/housesit, and clear out their life savings to travel back home, they expect to find their loved one being properly taken care of by the health care system. And what they find instead is often far from what they expected.
When I heard my mother had fallen down and was in a rehab center, I of course expected her to be being taken care of, healing up, and getting physical therapy. Instead she was emaciated and barely conscious, unable to talk, appeared to be dying, but no IVs or monitors or anything. I asked why she wasn't in the hospital and they wouldn't answer me. At all. Wouldn't tell me anything, despite that I had the Power Of Attorney signed by her in my hand.
It took 3 full days before someone showed up who had the authority to talk to me. Then I found out what had happened. She had indeed fallen and had been in the hospital but had been declining. Her tests had came back positive for cancer again. So she had signed out of the hospital and signed up for palliative/hospice care at the rehab place; DNR etc. It all made sense once it was finally explained. It matched with what we had talked about years before.
But for a few days there, you can bet I was upset. In truth, the nurses there were wonderful and were doing the best they could to make her comfortable as she died. I'm thankful for them.
But not only was it not at all what was expected (fell down and damaged her leg, now in rehabilitation), they also wouldn't explain at all. There's also the side effect that the family member may be a lot older and sicker than the visitor remembers and expected.
And there's also the communication factor at the family level. People find it hard to talk about that stuff to their family members, so they often don't. They might be hearing it for the first time from hospital or hospice personnel. If they can even get those people to talk to them.
I understand why it's tough for the nurses too, to see someone encountering that, and have to talk to them and refuse to tell them anything.
The whole way we handle situations like that is a mess, for everyone involved.
And folks in the system may note that if folks lived close to or with their elderly parents many issues could be dealt with more easily.
You had authority (poa) but may have been seen as abdicating responsibility.
Ideas for folks who want to be active in parents lives.
Try to live close by. Free childcare when they are healthy. Even just weekly visits in assisted living w kids occasionally is game changing for parents quality of life.
Go big early on accessibility at home. Grab bars, walk in showers , shower bench etc etc . They will get used eventually.
Same with in home support. Try to get a relationship going w someone or agency early while parents have agency. One day a week, pay for something pt even etc. Can take going through a few to find a fit - some will be horrible and just after discharge not a great time to be sorting this all out. Just being in system for support can be a big win on things like hospital discharge.
Lots of challenges in all of this, but societal factors (living far away, work life balance etc) are a part of this, not just medical system.
