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I completely understand your frustration. Yes, I agree talking with the doctor is the best next step. Ask if there is a local Home Health agency that he/she can refer you to - or ideally, a Home Health agency that has a Hospice component as well. Then you can move back and forth to the best group of home nurses based on whether you are getting active treatment or not.
Of course, you must realize that you have to drive to the hospital/cancer center anyway if there are any concerning symptoms once you start chemo. A hospice nurse is not appropriate for managing issues during chemo - you call your oncologist or the oncology nurse. So I don't understand why the center is ?encouraging you to stay with Hospice. What are hospice doing for you now that a regular Home Health agency can't do?
There is still a balancing act with Hospice... deciding what is reasonable treatment for comfort/quality of life, and what is too much intervention. Yes, it is absolutely true that stents are considered palliative, and chemo strictly speaking is palliative for PC as well, and therefore should be part of hospice. It's just that it is pricey and for some hospice organizations, more aggressive then they prefer. Sometimes I think they don't realize that a chemo like Gemzar can be well tolerated and if it helps control the disease well enough to improve your appetite or pain, that is still worth it even if it can't cure you.
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