Does anyone have experience with Palliative Care?

Sorry you are dealing with all of this
I too have a huge laundry list of chronic debilitating illnesses
I would like yo throw something out there…I have severe stenosis and arthritis in my spine ( neck down )
All my problems stem from that
Like you I have specialist but I did go Palliative Care
He will help oversee my care but he only medicates gor pain for cancer patients
I have another pain dr too
Go for consult if you can find one
Try Mayo or go South to Gainesville

@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.

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

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/

@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.

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.

@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.

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.