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Does anyone have experience with Palliative Care?

Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)

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@lisakuehl

My husband, who had a terminal mesothelioma diagnosis from Mayo Rochester, saw their palliative care (PC) department many times, but I recall that I had to request those services during our initial consults with pulmonology. I did not find any of their offerings to be particularly helpful in our case and some of what they did was hurtful. We did not live in the Rochester area, so I suspect that the best way to get the optimum care is to live where your care team is located. I am disappointed that our pulmonary doctors did not initially set us up with PC - mesothelioma is a difficult cancer from a symptom management perspective. So my experiences with a PC term were not what I'd hope it is for others. Perhaps my expectations are too high. At the end of his life, we got on board with our local hospice. That was also an unfortunate experience. I wish doctors would focus more on encouraging quality of life instead of trying to "treat" diseases from which there is no recovery.

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Replies to "My husband, who had a terminal mesothelioma diagnosis from Mayo Rochester, saw their palliative care (PC)..."

@lisakuehl I am saddened to hear the responses from both Palliative Care and hospice groups did not live up to what you needed from them.

I am wondering if it would be helpful for you to explain your situation to them, and let them know how they could have improved their actions? It may be very rewarding for you, help with your grieving process, and pave the way to another patient's family having a better experience.
Ginger