Does anyone have experience with Palliative Care?

I am sorry you had such a difficult experience.

Guardrails are not allowed in assisted living or rehabs or nursing homes in my state. Hospice provided a large squishy pad to go on the side of the bed. Beds are alarmed, and alarms go off with any significant movement, but facilities are short-staffed.

Our experience with hospice was not provided by a facility, but by a hospice organization. The only hospice facility in our area is generally for final days or pain relief. Hospice services were offered in homes or assisted living or memory care, nursing homes etc. but were separate from the facility.

My only goal here is to encourage people to avail themselves of hospice earlier, and understand that treatments for other things, including meds, can still be continued.

Windyshores,
It depends on the state in which you reside, it depends on the contract the facility has you sign, it depends if you have engaged legal protection for directives.
There are many factors involved legally, medically and financially when being admitted into a palliative facility.

Many people, initially going into independent living and having years of freedom are surprised when admitted into palliative care by their limited freedoms.
Thruout the years, Laws change, too. And the Facilities policies change.
These can be detrimental to the residents.
Relevant Case in point: MANY palliative care facilities nationwide have removed the residents bed guard rails.
This was based on a study, which I read.
Im not going to argue this point here, but there's a lot of merit that this has been a dangerous policy for the residents.
No HOSPITAL I know of has Removed the bed guard rails. They WANT their patients confined. Why? To keep their patients safe AND for Liability.

When my mom was first admitted to the palliative care center, she had guardrails for at least a year.
Then on one visit I saw they were gone. I asked why were they removed. I was told it was a new law; it was considered Confinement.
I had to consult an attorney because my mom needed the Protection of BEING confined rather than the Freedom of Not being confined.

The attorney I spoke with regarding the state my mom resided in, informed me it was not a state law nor a federal law, but, it was a facility Policy.
He told me kindly, “If your mom has a fall and dies, call me.”

My mom as well as other residents, had an INCREASE of falls since the guard rails were removed.
I know because I had asked a couple of the residents’ adult children if their loved ones had been affected by the new “law”.
They said their parent had More falls.

See how changes in laws and policies can affect you or your loved ones life at the stroke of a pen in palliative care?
Hospitals consider a guardrail as safe.
Palliative care facilities consider guardrails as confinement.

Im trying to use My experience with palliative care to help educate others who might not understand the complexities involved with palliative care.
I hope for those interested, it helps them for their now or future use.

I do not understand either why a hospice patient would lose control of their care decisions. When I was a hospice social worker we had patients in skilled nursing facilities but they as well as their designees did not give up decision making. I will say that the two hospice organizations were community non profit and rural but would that make a difference?

Sorry I don't understand and won't argue with anyone else's personal experience. It is helpful for others to know that dementia is a diagnosis that hospice honors, at least in many cases. For those without financial resources, hospice offers services that might not otherwise be available. Most people seem to think hospice is for the final days of life, which is too bad, since people can get these free services for months and sometimes even years, or off and on.

I am not sure why you say you would lose medical control. I did not lose any medical control. For medical care in general, whether PCP, hospital, rehab, assisted living, nursing home or hospice, it is important for people to have medical P of A/proxies, medical directives, and have the proxy invoked when the person is no longer capable.

Windyshores,
I have praised hospice for the IN CARE HOME OF my dad.
They were marvelous in ALL aspects.
He died in his home, as HE Planned.
My point is, and its relevance, was in response to the initial post regarding PALLIATIVE CARE.
This was MY experience with My mother.
When she moved into palliative care from assisted living and had 2 doctors declare she had dementia, I became her medical poa.
If you read my post closely, you will see it was the Facility that was asking me 3 times if I would consider hospice for my mom.
Hospice did not address me.
She simply was Not a hospice candidate, not when she entered the palliative care facility or when she died.
Her condition did not warrant hospice at the initial admittance NOR when she died.
This was My observation and My private nurses observation.
Im directing my concerns with the palliative care FACILITY that had asked me 3 times and tried to SELL me into putting my mom into a hospice program by enticing me by saying she would benefit by getting:
1) 2 baths a week
2) her supplies paid for
3) a free wheel chair
She was already being Provided by the Facility with 2 baths a week, and could afford paying for whatever she needed.
My private nurse and I discussed:
1) WHAT would my mom be gaining MEDICALLY by going into a program she MEDICALLY And Financially did Not need? What would I be gaining if she went into hospice?
Nothing.
2) What would she be losing?
My legal ability to direct the Facility in providing the medical protocols my mom would want which I Did direct.
We decided No to the Facilities offer for hospices care 3 times.

THATS the point of my comment regarding Palliative care and the freedoms the Resident And Family MIGHT lose if they surrender their legal rights to a third party.

As Jake commented, they incurred a similar situation.
When considering palliative care for yourself and/or your loved one, Im suggesting the people considering it to be Thoroughly educated in ALL aspects.
Especially when the time comes when death is drawing near.
I wanted to maintain authority over my moms care.
I was blessed to do so.
She did not NEED hospice, BUT, if I and my private nurse thought her health would benefit from it, yes, I would have enrolled her in the Hospice of the Valleys program.
As for considering these graduated retirement communities:
understand,
your freedoms are yours while you're in good INDEPENDENT health, living in one of their private apartments.
Once you require assisted or palliative care, your freedoms and possibly your families freedoms diminish UNLESS you have a good medical POA out into place.
Hopefully knowing that fact wont bother you, but rather prepare you to put into place what you or your loved ones want until they leave this earth.

I am also bothered by some of these posts. Hospice is an incredible resource that is underused because people wait until the person is actively dying, meaning, the last days. My mother was on hospice off and on for years.

I had an invoked proxy due to my mother's dementia. I still made all the medical decisions while she was on hospice, and hospice did what I requested.

Perhaps by "loss of control" @ebtexas55 is referring to the switch from regular Medicare to Hospice Medicare, under which treatments for the hospice diagnosis are prohibited. People don't realize that other conditions (different from the formal hospice diagnosis) can still be treated. And if you want, say, imaging done that is not approved by hospice, you can go off hospice that day and go back on.

Hospice provides free aide and nursing services that many could not otherwise afford. It can be for many months or even years. You don't have to be "ready to die." You do need a terminal diagnosis that is expected to bring death within 6 months, but that is often extended. And many do well with the increased care and go off hospice for awhile.

Jake, Im sorry this happened to your family, but glad your dad got what he wanted.
I feel for families and people who really dont realize what they may be surrendering once they or their loved one is admitted into a health facility, nursing home, palliative care or hospice.
Perhaps this will help others when they consider a third party overseeing their healthcare and couple it with a very strong medical POA.

My dad became a quadriplegic at age 58. My mom and I cared for him for the next 17 years. His insurance company kept trying to put him in a nursing facility since it would be cheaper for them. We ultimately took them to court and won. The Judge said the decision was up to my dad. The insurance was ordered not to contact us again regarding this issue. Although my dad didn't have Hospice but my mom did. I agree with @ebtexas55 that the family or healthcare power of attorney has limited powers. I'd only use hospice if no other alternative existed. But care homes, hospitals insurance companies do try to push you around. Be prepared to stick up for your rights and get attorneys involved when necessary.
Take care,
Jake

Becky, I apologize that you were bothered by my post.
I too, was bothered by some at the facility because of the decisions I made on behalf of my mother.
Let me clarify that some of this was during covid.
I declined requests that I know my mom would object to.
The other situation dealt with me being asked if I would consider putting my mom on hospice. I asked them “ What for? Shes not in hospice condition”.
I was then told she would
1) get 2 free baths
2) all her supplies paid for
3) a free wheel chair
Those are “selling” items and none of those were advantageous to contribute to her better health.
In fact, she was already getting 2 baths, had the money for the supplies and her wheelchair had already been replaced.
You see Becky, as I said in my post, my mom was not hospice ready. Her health was ok.
I was approached again 2 months later and was asked if I had reconsidered putting in her hospice. Again, I said no, not at all.
This was disturbing to me as well as to my private nurse that accompanied me.
There was no LEGITIMATE Health reason for my mom to be in hospice care there.
However, it was brought to my attention IF I were to sign my mom up in hospice, I would no longer be able to give any medical directives because i would be relinquishing them to hospice and my authority would be secondary.
With that said, she lived 7 months later without any hospice care and left us with a quick hit of pneumonia.
No hospice needed… just as i believed.

And let me clarify again, If i felt she should or wouldve been in the condition to require hospice, i would've signed her up with Hospice of the Valley.
But that would have been generated by me and Not the facility she was in.
I was there often enough to oversee how she was doing. And she was doing great!

@ebtexas55 I’m a little bothered by your posting. Why do you think that the facility wanted to “strip your legal authority over her”? Is this an experience that you had?