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.

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.

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@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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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.

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@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

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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!

REPLY
@gingerw

@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

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@gingerw I was not referring in any of my posts to a hospice "facility," other than a "hospice house" for last days. The longer term hospice and palliative care services I advocated for were home services.

Medicare is federal and their rules and regs don't vary state to state.

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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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Hi,

I have been going to palliative care for several years now. I am 49 a nurse (and yes, I am DNR/DNI). I have gastroparesis which is a "terminal" diagnosis. I am not going to die today or in the next few years even, but I will likely die sooner than most because of it.

Palliative care is for those who have greater than six months (but up to 2 years), though I have been going to palliative care for 4-5 years now. I feel that by improving my quality of life I have been able to extend the quantity. Though this isn't always possible, it can happen. Palliative care does NOT mean you are actively dying. Improving the symptoms (and a good provider can think outside the box and has a lot of great tricks for symptoms management up their sleeves)/

Also, I have severe, chronic pain and palliative care has allowed this to be managed according to my wishes. The appropriate management of pain is what is allowing me to continue working.

My wishes are to die in my home, surrounded by my pets, friends and family. Since this is down the road, palliative care has allowed me to live my life to the fullest.

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@catmomma glad you mentioned pain relief , the goal of palliative care! And the distinction between palliative care and hospice. In our area one organization offers both as well as a "bridge" program between the two.

I will say that first palliative care, then hospice care, over the years improved my mother so much that she would go off services from time to time. It helped alleviate suffering so much. I hope this continues for you.

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Hi all, as several of you have mentioned, palliative care and hospice care are not the same thing. People often use the terms interchangeably, which can cause confusion.

Palliative care focuses on improving quality of life for anyone who has a serious illness. it is sometimes referred to as symptom management care or comfort care. Patients can receive palliative care for many years as they manage serious illness.

Hospice care is a "subset" of palliative care for people whose illness has advanced to the point that they likely have less than six months to live.

To add to the confusion, some long-term care facilities use the two terms interchangeably.

Here is a short article from Mayo Clinic explaining the difference between palliative and hospice care.
- Mayo Clinic Q and A: Palliative care — improving quality of life during a serious illness https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-palliative-care-improving-quality-of-life-during-a-serious-illness/

REPLY

Hello,
I am 69 years old turning 70 this August. I’ve been severely disabled for over 33 years from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
I was totally home confined and bed ridden for the better part of 20-25 years during this time span. Too many symptoms to describe but painful enough and severe enough to alter my ability to function anywhere near normal or minimally functional on any kind of a mental, physical, cognitive, psychological or emotional basis. Of course, some periods of time are better and or worse than others. Succinctly stated, I haven’t been able to work or participate on any level of employment if earn a living since so was age 37. Fortunately, I had adequate disability insurance income protection which provided my economic security and prevented me from becoming homeless. Without that incredibly important insurance protection I would have become homeless within a 3 to 5 year period of time. I was so debilitated that I could not care or provide for myself. Thankfully, my beloved wife for almost 15 years was my full time nurse for the first 1- years of my total disability. I won’t discuss my personal life any further than that at this time as I will try to address your question regarding PALLIATIVE CARE. In addition to all of the areas in my life that I am severely debilitated etc, I’ve concurrently had to manage extreme levels of acute-chronic pain and exhaustion, The only successful treatment I’ve found to manage all of the above is utilizing opioids. Unfortunately, due to the horrific mismanagement of opioids by our government and its ridiculously unsuccessful “War on Drugs,” they are punishing the wrong people and placing legitimate pain patients and their physicians in a very precarious and life threatening position. Legitimate chronic pain patients are not the ones dying from overdoses. To be clear, the overdose deaths are being caused by illegal and illegitimate street drugs containing poisonous Fetanyl! However, these statistical deaths are included in the same category as responsible patients like myself and the responsible physicians who have treated me the past 33 years. It’s really embarrassing and dangerous to have our government take and make such irresponsible and reckless decisions with the lives of patients and their doctors. It amounts to nothing less than “government sponsored murder!” Firstly, Chronic Pain patients do not experience any kind of “HIGH or EURPHORIC” feeling when taking their doctor prescribed opioids. They simply “MANAGE” and reduce the levels of severe pain from a level of 10 down to a 6 or something close to that. Neither opioids or any other pain management system gets rid of all of the severe pain. It simply reduces unmanageable pain down to levels where people can still manage their lives to some degree and don’t have to consider or commit suicide as the only viable escape from the unbearable pain if they are denied their pain medication. Can you believe that our country and government are more concerned with withholding legitimately controlled and managed pain meds from patients and would rather see and or let people cruelly suffer and commit suicide than have live through the continued access of their to their pain meds! Keep in mind that the medical community and the government have not and do not provide any “VIABLE” Pain management alternatives. This is nothing short of the systematic murdering of its citizens. They are more concerned about trying to stop the drug related murders on the street, (which they can’t) as being more important than preventing the deaths by suicide, (which are absolutely preventable). We live in one screwed up country when it comes to providing adequate and humane health care for the elderly and seriously debilitated people in our society. To answered your question. I sought out PALLIATIVE CARE so if my current doctors who prescribe me opioids etc were to retire, move away, or no longer be able to practice medicine for any reason etc, my Palliative Care Physician could immediately step in and provide me with the prescriptions I require to manage my severe pain and debilitation. Palliative Care also provides an “UMBRELLA” of medical, mental and health care services to assist you with the overall care and management of your severe health care needs and concerns. You have a team of physicians managing your wellbeing directed by your palliative care physician. I am grateful and appreciative to have and utilize my Palliative Care Team. You can research “PALLIATIVE CARE” in the area you live in and start to put together some level of Palliative Care and or team for yourself. It has definitely improved my overall health and well-being,
Best wishes and good luck,
Phil

REPLY
@philipsnowdon

Hello,
I am 69 years old turning 70 this August. I’ve been severely disabled for over 33 years from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
I was totally home confined and bed ridden for the better part of 20-25 years during this time span. Too many symptoms to describe but painful enough and severe enough to alter my ability to function anywhere near normal or minimally functional on any kind of a mental, physical, cognitive, psychological or emotional basis. Of course, some periods of time are better and or worse than others. Succinctly stated, I haven’t been able to work or participate on any level of employment if earn a living since so was age 37. Fortunately, I had adequate disability insurance income protection which provided my economic security and prevented me from becoming homeless. Without that incredibly important insurance protection I would have become homeless within a 3 to 5 year period of time. I was so debilitated that I could not care or provide for myself. Thankfully, my beloved wife for almost 15 years was my full time nurse for the first 1- years of my total disability. I won’t discuss my personal life any further than that at this time as I will try to address your question regarding PALLIATIVE CARE. In addition to all of the areas in my life that I am severely debilitated etc, I’ve concurrently had to manage extreme levels of acute-chronic pain and exhaustion, The only successful treatment I’ve found to manage all of the above is utilizing opioids. Unfortunately, due to the horrific mismanagement of opioids by our government and its ridiculously unsuccessful “War on Drugs,” they are punishing the wrong people and placing legitimate pain patients and their physicians in a very precarious and life threatening position. Legitimate chronic pain patients are not the ones dying from overdoses. To be clear, the overdose deaths are being caused by illegal and illegitimate street drugs containing poisonous Fetanyl! However, these statistical deaths are included in the same category as responsible patients like myself and the responsible physicians who have treated me the past 33 years. It’s really embarrassing and dangerous to have our government take and make such irresponsible and reckless decisions with the lives of patients and their doctors. It amounts to nothing less than “government sponsored murder!” Firstly, Chronic Pain patients do not experience any kind of “HIGH or EURPHORIC” feeling when taking their doctor prescribed opioids. They simply “MANAGE” and reduce the levels of severe pain from a level of 10 down to a 6 or something close to that. Neither opioids or any other pain management system gets rid of all of the severe pain. It simply reduces unmanageable pain down to levels where people can still manage their lives to some degree and don’t have to consider or commit suicide as the only viable escape from the unbearable pain if they are denied their pain medication. Can you believe that our country and government are more concerned with withholding legitimately controlled and managed pain meds from patients and would rather see and or let people cruelly suffer and commit suicide than have live through the continued access of their to their pain meds! Keep in mind that the medical community and the government have not and do not provide any “VIABLE” Pain management alternatives. This is nothing short of the systematic murdering of its citizens. They are more concerned about trying to stop the drug related murders on the street, (which they can’t) as being more important than preventing the deaths by suicide, (which are absolutely preventable). We live in one screwed up country when it comes to providing adequate and humane health care for the elderly and seriously debilitated people in our society. To answered your question. I sought out PALLIATIVE CARE so if my current doctors who prescribe me opioids etc were to retire, move away, or no longer be able to practice medicine for any reason etc, my Palliative Care Physician could immediately step in and provide me with the prescriptions I require to manage my severe pain and debilitation. Palliative Care also provides an “UMBRELLA” of medical, mental and health care services to assist you with the overall care and management of your severe health care needs and concerns. You have a team of physicians managing your wellbeing directed by your palliative care physician. I am grateful and appreciative to have and utilize my Palliative Care Team. You can research “PALLIATIVE CARE” in the area you live in and start to put together some level of Palliative Care and or team for yourself. It has definitely improved my overall health and well-being,
Best wishes and good luck,
Phil

Jump to this post

@philipsnowdon I wish I could rate that response 1,000%. Glad you still have meds.

My mother finally was able to get morphine (sublingual) when she went on hospice services. I am glad to hear your palliative care team sees the need.

REPLY
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