1. < Chronic Pain

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 20, 2020
In reply to @ashby1947 "Hi Colleen - Please see my post from yesterday. I spoke with Dr. Robinson, who was..." + (show)
@ashby1947

Hi Colleen - Please see my post from yesterday. I spoke with Dr. Robinson, who was kind, professional, and informative; however, she spoke of pretty well defined criteria for whom they would and would not accept into the palliative care program. She also did not consider the referral from my PCP and referenced me as a self-referral. Perhaps that's because my PCP is not a member of the Mayo staff. I'm sure it's a great program, as, in my experience, all Mayo programs are. But apparently it is not for me. Back to the drawing board! Have a good day. Sue

Jump to this post

Hi @ashby1947, I'm so glad you were able to connect directly with Dr. Robinson. I'm not sure why your request was considered a self-referral rather than the referral from you PCP. Essentially, it shouldn't make a difference how the referral came in, it is the eligibility criteria that is considered.

Eligibility criteria will differ depending on the state, region and institution. Here is some general guidance:
- How Is Eligibility For Palliative Care Decided? What Procedure Is Followed? https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/Palliative+Care/How+is+eligibility+for+palliative+care+decided_+What+procedure+is+followed_.aspx
- Palliative care: Symptom relief during illness https://www.mayoclinic.org/tests-procedures/palliative-care/in-depth/palliative-care/art-20047525

Sue, might a coordination of care as suggested by other members in this discussion be more akin to what you need?

REPLY
ashby1947 | @ashby1947 | Dec 20, 2020
In reply to @colleenyoung "Hi @antillon8084, I'm glad you found this discussion. At Mayo Clinic, and I believe elsewhere, a..." + (show)
@colleenyoung

Hi @antillon8084, I'm glad you found this discussion. At Mayo Clinic, and I believe elsewhere, a patient doesn't require multiple referrals from specialists for access to palliative care. A referral can be made by your PCP or a particular specialist like an oncologist, cardiologist, pulmonologist, neurologist, etc depending on the underlying condition that is initiating the referral.

Antillon, do you have experience with palliative care? How did you get referred?

Jump to this post

Hi Colleen - Please see my post from yesterday. I spoke with Dr. Robinson, who was kind, professional, and informative; however, she spoke of pretty well defined criteria for whom they would and would not accept into the palliative care program. She also did not consider the referral from my PCP and referenced me as a self-referral. Perhaps that's because my PCP is not a member of the Mayo staff. I'm sure it's a great program, as, in my experience, all Mayo programs are. But apparently it is not for me. Back to the drawing board! Have a good day. Sue

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 19, 2020
In reply to @trishanna "@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be..." + (show)
@trishanna

@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be eligible for such care right now, and yet I'm trying to juggle receiving care from about ten physicians - including surgeons and specialists, physician assistants, etc., sometimes overlapping or contradicting. Would there were a service for us.

Jump to this post

@trishanna I’m sorry to hear that some of you don’t qualify yet for palliative care. We all need help as we get older! Earlier, I had mentioned geriatric care managers. They are usually masters educated nurses who try to help pull all the details together for their clients. They might be worth investigating. I’m going to see what I can find
https://www.homecarepulse.com/articles/national-association-of-professional-geriatric-care-managers/
https://www.nia.nih.gov/health/what-geriatric-care-manager

REPLY
1 reply
daniel2709 | @daniel2709 | Dec 19, 2020
In reply to @trishanna "@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be..." + (show)
@trishanna

@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be eligible for such care right now, and yet I'm trying to juggle receiving care from about ten physicians - including surgeons and specialists, physician assistants, etc., sometimes overlapping or contradicting. Would there were a service for us.

Jump to this post

I would love a central person to be the REFEREE!!! Dan C

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 19, 2020

@ashby1947 @ess77 @jakedduck1@trishanna This palliative care conversation is an important one, especially for those of us navigating our corners of the world alone, or separated courtesy of the pandemic, or for whatever reason. I wonder if anyone has looked into their county's Area Agency on Aging, or Senior Services? While some of us may not qualify by age, these people, plus many faith based groups, make an effort to assist those in need. I have heard of small groups who help make a big difference in the lives of those they help serve?
Ginger

REPLY
1 reply
ess77 - Elizabeth | @ess77 | Dec 19, 2020
In reply to @ashby1947 "Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope...." + (show)
@ashby1947

Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope. I wanted to let you know that my PCP did refer me to Mayo Palliative Care. I spoke to the Dr. director of the program, and she explained that I do not fit their criteria for the program. They work with primarily people with cancer or other end of life issues. She was very thoughtful and kind. So, I'm still exploring optionsd and working with my specialists. I hope this is a good day for you! Sue

Jump to this post

Hello, Sue. Well, now you have an answer. No matter what it is, it's always to good to get one! I'm sorry that's not the solution you need right now. I took something quite different from her video, so I'm a bit surprised. May I ask you what you do need? The specific kind of service? I need help maintaining my home, better. I can do some things some times, but nothing can I do just because it needs doing.....make sense? Housekeeper is good, but not as dependable as I'd like. I think I need a 'helper'. Someone to help with things I can't or shouldn't do, like get things up and down stairs! Laundry! I put in a load of laundry and by the time it's ready to remove it, I'm too tired or in too much pain and have to leave it......sometimes overnight or for a couple days until I am better. Not good. I want to hang my personal clothing upstairs in the 2 bathrooms, but have to get wet clothes up there! THen, hang them up! Since my finance died several years ago, I've gone downhill some, gotten behind on the condo reno that he and I were doing together, etc. He had a home in Mandarin....I hope you like that area....I lived there for a few years and loved it. My condo is in SS, San Jose/Baymeadows area. Had we married before he died, I'd be living in his home we shared for a bit. It backs up to a creek, with woods, houses nearby but hidden by the trees. We enjoyed it, but life changes and moves on it's way. Guess I'm working on thinking and plannning, still. Let me know how you are, what you need. Last year, I spoke with a social worker at Mayo.....think I'll contact her again and see what she has to offer. She has some good contacts that may help. Let you know. Blessings, Elizabeth

REPLY
trishanna | @trishanna | Dec 19, 2020
In reply to @ashby1947 "Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope...." + (show)
@ashby1947

Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope. I wanted to let you know that my PCP did refer me to Mayo Palliative Care. I spoke to the Dr. director of the program, and she explained that I do not fit their criteria for the program. They work with primarily people with cancer or other end of life issues. She was very thoughtful and kind. So, I'm still exploring optionsd and working with my specialists. I hope this is a good day for you! Sue

Jump to this post

@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be eligible for such care right now, and yet I'm trying to juggle receiving care from about ten physicians - including surgeons and specialists, physician assistants, etc., sometimes overlapping or contradicting. Would there were a service for us.

REPLY
2 replies
Leonard | @jakedduck1 | Dec 19, 2020
In reply to @ashby1947 "Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope...." + (show)
@ashby1947

Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope. I wanted to let you know that my PCP did refer me to Mayo Palliative Care. I spoke to the Dr. director of the program, and she explained that I do not fit their criteria for the program. They work with primarily people with cancer or other end of life issues. She was very thoughtful and kind. So, I'm still exploring optionsd and working with my specialists. I hope this is a good day for you! Sue

Jump to this post

Well I still don’t get it. I didn’t know I was that dense but apparently I am.
Could someone explain what criteria have to be met to qualify for Mayo Clinic Palliative care
Thank you,
Jake

REPLY
ashby1947 | @ashby1947 | Dec 19, 2020

Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope. I wanted to let you know that my PCP did refer me to Mayo Palliative Care. I spoke to the Dr. director of the program, and she explained that I do not fit their criteria for the program. They work with primarily people with cancer or other end of life issues. She was very thoughtful and kind. So, I'm still exploring optionsd and working with my specialists. I hope this is a good day for you! Sue

REPLY
3 replies
ess77 - Elizabeth | @ess77 | Dec 18, 2020
In reply to @merpreb "@becsbuddy- These are really wonderful tips Becky. @ashby1947 and @ess77- I think that there might be..." + (show)
@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?

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.