We just joined Palliative Care at UCSF this week. We had debated, but found them very caring and extremely kind. Their chief desire is to enhance the quality of life during the time we have left. The doctor changed one medication and deleted two others because it was obvious that they were not helping my issues. We did this on a FaceTime type visit so that our two grown children could also be included. It was perfect! Medicare is paying for this although I'm not on hospice yet, so don't know about that. Your diagnosis is about 4 months later than mine, but wish I had done this sooner!
dl, I enrolled in hospice two months ago. We made sure I had everything I needed as far as the wheelchair is concerned prior to enrolling. I purposely waited a few months while I had a vent tray and some head controls added.
As for hospice, we have also been very happy with them. The nurse is coming only once a week for a short visit. I see an aide who helps with showers and range of motion stretches three times a week. They help with random supplies and the equipment I have, Trilogy, cough assist and suction transferred easily. We actually kept the same units. Hope this helps.
Palliative care is viewed differently in the US from Canada apparently. It is to alleviate suffering from a serious illness and theoretically could start at illness onset. In fact my clinic has been looking at starting it very early. I have already seen the neuro palliative physician. Cancer research showed improved quality of life with early palliative care nd they are trying it for ALS now.
Hospice services essentially replace Medicare. Palliative services are an add on here and medicare continues
We have started palliative care a few months ago and if pALS wants to he can still go to his appointments in the ALS clinic or go to any other physician he wants to.
I found they were much more willing and open to talk about the dying process in detail.
Luckily for us the palliative care physician is somewhat familiar with ALS which is great.
"Palliative care" technically means care that is no longer intended to cure, but rather to comfort/reduce pain.
In the US, it has come to mean a possible bridge between regular care and hospice. Managed care and Medicare are pushing the idea as a way to ease more people into hospice. So now clinics, agencies and hospices are all propagating it as a service line. Kind of like the beginning of the end.
But most everywhere else, it is used more generically and care with that intent can be delivered in many different settings. Going into hospice is really the ultimate palliative care level, but they are split from each other here for billing purposes.
But here in the US you can be in palliative care and still be seeking treatment and even cure. If one had cancer and chose chemo for example that would not disqualify from palliative care but chemo would be a disqualifier from hospice.
Yes, it's only in straight-up hospice, as Nikki points out, that coverage for "curative" treatment for the qualifying condition is not covered. However, we always want to clarify that Medicare will continue to pay for blood pressure meds, etc. even in hospice.
The hospice agency is paid a flat rate for hospice care and related supplies. That is why it's always wise to look for a not-for-profit hospice, because one that is for-profit has profit to support off that flat rate in addition to its costs.
Kim, pain management/palliative care programs can be somewhat obscure, but here is one directory and here is another. Often if you click on a link, you'll land on a home page and have to navigate to the palliative care info.
There is a physician subspecialty and about 7,000 US docs are certified so far.
Since it can be hard to find programs, I have attached the latest lists of programs for palliative care/hospice and pain management that are certified to train residents and fellows -- these aren't the only ones, but if they're not convenient or only work at the hospital level, they may have referrals closer to home for you.
I see palliative care every 3 months, and it does not disqualify me from anything, it's just another provider but focused around supporting my quality of life as best possible. Initially they helped us with some end of life planning, but now our visits are primarily helpful for managing medication. My palliative care doctor does all pain management, but has also helped me make decisions on meds prescribed by my neuro relating to other als symptoms. For example my pal care doctor encouraged me to try mexiletine after ive had so little success with gabapentin and then lyrica for muscle cramps. My neuro pushed more for me to stick with gabapentin. I feel like palliative care does a better job helping me figure out what **I** want and then supporting that. Even though we went a different direction my neuro supports decisions I make with palliative care and they communicate directly so we're all on the same page.
My PALS went on pallative care just over a month ago, maybe two months. A doc came to visit her and asked a lot of questions and that was it. There are no benefits from being on pallative care in New Mexico as it really doesn't do anything. Then we received the EOB for the visit and the charge was $923!!! OMG...are you kidding me?? For what? Nothing...the doc did nothing medical and even if she did that charge is ridiculous. Medicare paid around $173 and BCBS paid around $45. What is weird to me is that the pallative care doc is not even employed by the hospice agency we chose; she is employed by a cancer center as she is the hospice doc for that cancer center and the hospice just uses her for pallative care.