Does anyone have experience with Palliative Care?

Posted by ashby1947 @ashby1947, Dec 11, 2020

Hello Everybody - If you have had experience with Palliative Care, I would truly appreciate hearing about it. What were your medical issues? What did your Care Team do? Did it work for you? I'm a 73 y.o. woman with multiply medical problems, most of which are severe: uncontrolled BP (on many medications which create their own problems); dizziness and lightheadedness; Hx of atrial fibrillation and supraventicular tachyicardia; stomach pain daily 8 or 9 on scale (this is recent and I'm not sure tx for heart burn is correct) and all the accompanying issues of no appetite, weight loss, constant nausea; diplopia which affects balance and self-confidence; lumbar stenosis; dry eye syndrome; and other. Sorry, don't mean to be tedious. The reason I mention all these is that dealing with all of them, every day, is making me exhausted and depleted physically, mentally, emotionally, and spiritually. My husband is great; however, this obviously affects him. I am barely able to accomplish activities of daily living, and recently I have asked him to drive me because I don't feel confident on my own.

I know that hospice care is for those with 6 mos or fewer to live. What I've read about Palliative Care mostly talks about care for people with one significant issue - cancer, heart disease, kidney failure. I wonder if I would even qualify since I have multiply problems. I have very good physicians and medical care here in Jacksonville. But they are each specialists. You know how it goes - no one is dealing with how they all interact and the compound effect on me. I have a long session scheduled with my PCP in a few days. He seems to deal only with the presenting problem.

Any thoughts or experiences you have had would be welcome! Hope this is a good day, Sue

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@kellyanne9

It saddens me to think that whether it be aging, disabled or the need for palliative care that money and what you can afford comes before caring for the person and their needs and the families. Something needs to change.

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@kellyanne9 I think that you’re right hen it comes caring for the aged, disabled, or those needing palliative care. It’s difficult but we do have to remember that it COSTS money to care for the aged, disabled, and those needing palliative care. My father and mother received hospice care will in their long term care home. Yes, it cost $$. Money to pay salaries, a hospital bed, wheel chairs, frequent nurse visits, and gas to help get them there. Yes, it would be nice for insurance to pay, but would you pay more in premiums just in case you needed it some day?
What would you suggest as a fairer option?

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@ebtexas55

Where do you live? This makes a difference.
Ive gone thru this with my mom in AZ for the past 2.5 years.
Hospice… only in your home. There are few good ones, I can say Hospice of the Valley in Phoenix, Tempe and surrounding are is good.
My dad has hospice in his home. My mom did not utilize hospice in her facility by my choice. The health facility approached me 3 times to consider it. She didn't need it. She wasnt at the dying point. My observation: the facility wanted her on hospice to strip my legal authority over her. I truly believe that was the reason. ( and so did my private nurse who accompanied me for over a year traveling with me to observe her)
My Observation with palliative care is tricky, especially when Hospice gets involved. (Excluding Hospice of the Valley).
Theres a fine line between healthcare and real estate.
If youre buying in to a palliative facility, youre buying care AND renting real estate.
That can get sticky. You dont own the real estate, the company does. Youre Renting it out under the umbrella of Health Care until you die. Thats what its about at this stage in life.

If you have the money to go into Palliative Care but no family or support around you, then you are at their mercy.
I would consider using that money for a live in companion or a companion for 4-8 hours a day. That means they would get things done for you that you can't do yourself. If you have family in another state, consider selling your place if you have one, and live with them OR find a facility near them.
Get them involved.
Hospice, under certain situations can come into your home. They did for my dad for 6 months, then they rightfully dropped him. He went on again about 2-3 years later. After 6 months dropped again. About 2-3 years later, they got involved because they knew his one and inky kidney was shutting down. They told him he had up to 6 months, and they were right. 3 months before he died, we hired a nurse to stay with him.
My mom was alive but 86 and she could not help him. Her strength could not lift him onto the toilet)
His departure was done respectfully, with love and with family and nurse around him. He was in his own home.

After he died. My mom sold the house an moved into a graduated community fa$ilaty. She Bought into the $ystem; private apartment 8 years, assisted living 4 months, then palliative care for 2.5 years.
Not my choice. She chose this route without discussing it with me.
She was diagnosed with dementia and then my Medical Power of Attorney kicked in.
I was flying into Phoenix twice a month for 3-5 days each month.
She lost all her freedom during covid. Thankfully I could still get in to see her.
She realized then she was trapped in the palliative care fa$ilty. She said she never thought she would live this long. (She was 95 then)
Consider:
1) your gains and losses when considering palliative care.
2) family and friends.
3) how you can manage at home.
4) will chores like driving need to be delegated to someone else.
5) ifso, who?
6) if you want to stay in your home, how can you make it happen:
a) financially
b) safety factors
c) managing your money
d) hiring reputable person to oversee your business matters
e) compile a list of medical directives:
POWER of ATTORNEY
PERSONAL REPRESENTATIVE, YOUR AGENT
HOSPITAL DIRECTIVES: DNR

These are just a few.
If you have no family nearby, consider moving to a palliative care facility near them…. Discuss this with your family members.

Hope this helps your decision making.
Its a tough one. That's why its important to Build your community while youre younger, either with neighbors and/or social communities like churches, synagogues, or senior centers.

Blessings to you, today. 🌺

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@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?

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@becsbuddy

@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?

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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!

REPLY

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

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@jakedduck1

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

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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.

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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.

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@windyshores

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.

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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.

REPLY
@ebtexas55

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.

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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.

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@windyshores

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.

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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?

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@windyshores

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.

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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.

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