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.

ashby1947 | @ashby1947 | Dec 11, 2020

In reply to @colleenyoung "Great question, @ashby1947. Palliative care is more appropriately named Symptom Management care or Comfort Care. It..." + (show)

Hi Colleen - Thank you for your response and information. Yes, I spoke with a person at Mayo Jacksonville about their palliative care program. I learned that i need a referral from my doc in order to get an initial consultation. I see my PCP next week, so I don't think there will be a problem. I also learned that Medicare and my supplemental are accepted for payment. You are so good at following posts and making connections. You are a bonus in the Connect community, and I am grateful for the work you do for all of us! Thanks again. Sue

Colleen Young, Connect Director | @colleenyoung | Dec 11, 2020

Great question, @ashby1947.
Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively meant only at the end of life, but is multidisciplinary care focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient.

As you mentioned, palliative care may be offered for people living with cancer, heart conditions, kidney conditions, multiple chronic conditions and more. For this reason, I have added this discussion to multiple groups on Connect to gather experiences from different members such as @IndianaScott @bluffitis @wsh66 @marvinjsturing @mscarano @becsbuddy @nicee and others.

Ashby, have you inquired about palliative care at Mayo Clinic in Jacksonville?