OK, so WHO makes the decision to put a person into Palliative Care, the doctor(s) or the patient?
Since they say there is no cure for PLS or ALS, I feel my Clinic visits are more geared toward treating my symptoms rather than curing me. So what's the big difference? TB
Laurie is absolutely right, and I want to emphasize: The Patient always makes their health care decisions. The doctor should be your guide, not your boss. Of course, keep in mind that your doctor is a million times smarter about medicine than any of us.
Since there's no cure, everyone is always treating symptoms only, no matter what they call the care you're under.
In my PALS case, we progressed from "clinical care" to "palliative care" and then "hospice" and finally "hospice crisis care." The difference was the focus of the care team and the rules of the ER.
In clinical care, we saw all the highly trained specialists on the ALS team and they measured a lot of stuff. We had ALS experts available to us.
In paliative care, we stopped seeing the ALS people and saw a new set of nurses with one doctor. They didn't know squat about ALS, but were trained to focus on symptom relief.
In hospice at home, we were passed off to visiting nurses with an on-call doctor. No one knew anything about ALS, but they were used to dealing with end-stage people and kept my PALS comfortable. In hospice, we were not allowed to go the hospital or ER--we were to let any emergency take its course.
In hospice crisis care at home, we had 24/7 nurses in the home. No one knew anything about ALS or paralysis, but they were sitting in the kitchen in case I needed help. Again, we were not allowed any ER visits--we were to let any emergency take its course.
If you disagree with your doctor, you can always request a second opinion or you can even fire your doctor (assuming you can find another one).
Hope this helps. --Mike