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Does anyone have experience with Palliative Care?

Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)

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@merpreb

@becsbuddy- These are really wonderful tips Becky.

@ashby1947 and @ess77- I think that there might be confusion as to what palliative care is and how it's initiated. And I'm sure that this is different for each hospital setting. Interestingly, to me, palliative care was an offshoot of hospice care as a result, in the early 1900s, of seeing people with cancer who were suffering and in great pain, but they weren't dying! As time went by doctors and nurses and nuns were looking at new ways of managing pain, not wanting hospice to be just for the dying. And as time went on changes were made in gaps for treatments for the whole being, hence, Palliative care.

Palliative care should start with your PCP and branch out from there as you build your team of doctors. They will help you or make recommendations for other specialists if need be for pain management, spiritual guidance, emotional support, and even child care. So it may not be a separate department, per see, but referrals to see others who will help care for your needs other than radiologists, surgeons, and oncologists.

Earlier this year I had a very down to earth conversation with my oncologist as a result of my own misunderstanding of what was going on with my cancer. I was very depressed and scared and I worried about everything. Jennifer, my oncologist, explained everything to me and recommended if I wanted to see a therapist or social worker. My husband asked her if this was part of what is referred to as palliative care. She said, YES!

So, what grew out of pain with cancer patients has grown into a wonderful sub-specialty which means that the whole person is being treated, not just pain. It's not so much a program like hospice that you sign up for but an offshoot of caring for the whole of you.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/types-palliative-care
https://www.cancernetwork.com/view/effective-palliative-care-what-involved
Palliative care is an interdisciplinary medical approach that is aimed at optimizing the quality of life.

If you feel that this is something that you lack then ask for it! Sometimes there's a whole separate department and sometimes it's just a referral to a particular doctor.

Does this make sense?

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Replies to "@becsbuddy- These are really wonderful tips Becky. @ashby1947 and @ess77- I think that there might be..."

Hi Merry - Thank you sharing your experience. I will keep in touch as I investigate Palliative Care. Cheers, Sue

Yes, Merry, this makes a lot of sense. Long time overdue! I have no misunderstanding, just working through in my mind and life what I want/need and where I can best get what I need. So far, Mayo Jacksonville, is providing me wonderful care, 360 degrees. They are currently offering me palliative care within their system of service, so at this point, I need someone to help me with my condo redo!!! Sounds like you had a tough time and got some good advice/care. Blessings, Elizabeth