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Does anyone have experience with Palliative Care?
Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)Comment receiving replies
@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for a referral. Warning, some doctors may be reluctant to make the referral, but just emphasize that it is what you need and want.
To get ready for your meeting with Palliative Care, you want to make a list of all your doctors and what they do for you, what prescriptions they write, etc. Also, a list of all your medications and the pharmacies you use. And, then, what PC can help you with. It sounds like you want someone who can take some of the burden off of you. This is important because you need to save some of your energy for just taking care of yourself! Being sick/getting well is such a full time and exhausting job! Luckily, I’ve found that members on Connect really understand and are so helpful. I’m glad you found Connect! Good luck with your appointments and let us know what you learn. Will you do that?
Replies to "@ashby1947 and @ess77 I’m so glad that you’re taking the lead and contacting your PCP for..."
I'm chatting wwith the heart doc tomorrow afternoon. Then, PCP for referral. Maybe I can get referreal from cardiology at Mayo? My #1me neurologist, I have 4 or 5, has referred some as needed to other departments. If not, PCP it is. I pray for some good information and real help. I'm afraid most of the time I'm just surfing through.....need the help. Thanks for your encouragement, Becky. I'll let you know.
@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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@becsbuddy I have just added Palliative Care to my POA, etc., but had no idea how to initiate it. Thank you so much.