Does anyone have experience with Palliative Care?

I can share what types of POAs my mom had for me. I held all 3.
1) Durable Special Power of Attorney
2)Limited and Miscellaneous Power of Attorney
3) Health Care Power of Attorney
In her HC POA I could hire and discharge any medical professional outside of the facility. I had much freedom to decline any of the facilities requests in regards to anything they wanted to put into her body.
I had my mom on a lot of supplements which the facility was great at administering to her.
Any pharmaceutical the facility wanted to administer for my mom had to be approved by me.
At one time they suggested she get put on an anti depressant. I allowed it for 4 months and had then requested she get weaned off if it within 2 months. I saw no improvement or change in her. They discouraged it, but I insisted.
My mom was fine.
POAs maybe different and again, states may differ.
In my case, the facility and the facilitating dr had a copy of my HC POA.
I was in a very comfortable position and was very appreciative of the attorneys foreseeability to protect my mom as well as me.

Please let me share:
One thing I find VITAL in looking for palliative care:
Does the facility take each resident outside at least once a week? ASK! Or look for this when visiting a perspective facility.
Its sooo important to your or your beloveds health.
The facility may be understaffed, but a volunteer program could be set up.
When I was visiting, I had my mom outside at least 3 hours every day. Morning, 1-2 pm, then at 5:30 pm.
I hired someone to come sit with her 4 days a week, 4 hours a day exclusively to have her outside. She loved hearing the birds sing, looking at the flowers and getting sun and FRESH AIR.
It does a world of good for their mind, body and spirit.

Do your research. VISIT a few palliative care facilities and observe:
Does the place smell? Hows the food?(eat there) Do you see residents engaged with others and doing activities? Are residents calling for help getting help? Are people just scattered about?
And GET A COPY OF THEIR CONTRACT!

@windyshores @ebtexas55

I am reading all these posts, and can certainly see the merits of all the experiences and thoughts expressed! One thing I can gently suggest, is to look at what the protocols are in the state where your loved one is. There appears to be major differences in palliative care facilities. When we are faced with the need to look at care, it is often at a time of extreme emotional/mental and sometimes physical stress for us. We might not be able to "be there" as much as we would like, and may miss deciding factors, so having information ahead of time, and checking to be sure those same protocols are in place at time of need, could be a big help to us now.
Ginger

Where can I get information about what a “good POA” contains? My daughter has had a standard on which my trust attorney’s materials binder contained. But your post makes it sound like a cookie cutter POS needs massaging so she doesn’t have this stress/problem. Can you advise or send a link? Thank you.

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.