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Does anyone have experience with Palliative Care?
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
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@jakedduck1 Leonard, you can think of palliative care as an organization that provides coordination of care. It is not physical care. For me, they could help keep tabs on all my medications(lots!) and doctor visits. I have 3 visits this week for infusions and because of side effects, I have to change my diet. I think I’m young enough and smart enough to do all this for myself, but it’s a real challenge. Big challenge! They also manage side effects from diseases and pain. The goal of Palliative care is to help someone achieve the best quality of life possible in their circumstance.
Leonard, you provided loving care to your parents and may not have needed Palliative Care to coordinate for you. We all know the wonderful job you did and we thank you. Becky
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4 ReactionsApparently I don’t understand what palliative care is. I always thought it was pretty much taking care of your loved ones at home. My dad was paralyzed from the neck down for 17 years and my mom and I took care of him during that time. In the end he developed cancer which is what he died from. We continued to take care of him during that time as well, both at home and in the hospital. He never had hospice services. Then I took care of my mother who ended up being bedridden and died from heart disease. She had hospice at the end.
Thank you,
Jake
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4 ReactionsI have not yet been the patient but I have been a family member and it was such a relief to both my Dad and us. The medical staff, which included a chaplain, were there to advise on both medical plans, emotional needs, comfort and spiritual needs. I, as a United Methodist minister, have also been with families and patients as they have been in palliative care. They all, patients and all family members, seems to be very satisfied. I have also been a chaplain working in a hospital setting that have served in the family's needs. I would highly recommend palliative care when that need arises.
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8 ReactionsHi Merry - Thank you sharing your experience. I will keep in touch as I investigate Palliative Care. Cheers, Sue
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1 Reaction@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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4 ReactionsI'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.
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3 Reactions@becsbuddy I have just added Palliative Care to my POA, etc., but had no idea how to initiate it. Thank you so much.
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2 Reactions@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?
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7 ReactionsWow, sounds like you have figured it out! Thank you for sharing
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2 Reactionsantillon8084, I'd like the same info Ashby1947 requested re PCP. tks Elizabeth
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