Does anyone have experience with Palliative Care?

Finding a good geriatric doctor will help. They can put a person in touch with palliative teams, and at least know how to help a person. It helps if you live in a big city, or near one.

Thanks for explaining--and I am sorry your Dad is going through this rough time. You might talk to the PCP to discuss options. Palliative Care might include visiting nurses and possibly other helpful resources, but I think it differs somewhat from place to place. Consulting with the PCP could help set up a team approach for your father. Wishing you all the best with this.

I’m inquiring this due to my Dad. He’s 87 and has multiple conditions that are now significantly effecting his daily life. He’s at home now, but…not sure how long that will be feasible. His mobility is very limited. He has cardiomyopathy, which has resulted in CHF, an aortic aneurysm, multiple PVCs, CKD, hypothyroidism, Alz, and more. He says he is exhausted. We wish to explore the options to keep him comfortable. I was hoping his existing primary could do that, since he’s seen him for many years and their office is open 7 days a week.

I think palliative care is a specialty, particularly in terms of pain control and other kinds of support. Can you say a bit more about why you are asking? Have you or someone else been referred to palliative care recently?

Is there any reason the primary care provider can’t provide palliative care?

I am in total agreement with your assessment of the govt’s crackdown on the use of drugs & opioids by patients who really need them. I also don’t appreciate Big Pharma chiming in on a doctor’s assessment of what will work best for the patient. Then, Big Pharma turns around denying use of a prescribed medication when our physicians best know their patients & their needs.
I also believe that the cost of research done by Big Pharma is something that should be shared internationally & not causing the outrageous prices that Americans are charged due in large part to research.
I’m so sorry for your suffering for so many years.
Prayers, love & peace to you & your wife, Sir.🙏💕🌻

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/