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You are doing a great job. Your husband is so lucky to have you as an advocate. It is very hard to be an advocate when you find that your doctors and nurses do not have the same goals as you do.
As you have seen, many doctors just choose to 'give up' when it comes to PC. Many of us had to search for a doctor willing to help us.
As you have seen, Hospice and Palliative care are now evolving, and while in the past it focused on managing 'comfort' with drugs like morphine and ativan.... it is turning into a vehicle for helping us to LIVE with our serious chronic diseases.
Everything you have asked for is completely reasonable and appropriate.
Good luck to you, and keep us posted on your progress.
Best wishes to your husband too!
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