From Arlene: Based on Janet's research and Luisiri's response, there is something to lose with rituximab; Bill could feel a lot worse from side effects and complications. It is terribly disappointing that there is no treatment that can help slow down the scleroderma. What we don't know is whether it might slow down on its own and allow him to plateau for a while.
We want him to be as pain free and anxiety free as possible consistent with mental presence. However, given a choice between comfort and awareness, and a choice between comfort and life extension, Bill's health care directive says to err on the side of comfort. We don't know if he still agrees with this but that was his choice when the directive was prepared.
On Monday he was lucid, present, and responsive for a short time (he tired quickly), but I did not ask him this difficult question.
I cannot imagine you all being among these life/comfort/death choices for Bill. It does seem a difficult but relational choice to talk to Bill about his choices and prognosis. Staying relational with Bill is the most compassionate, and humbling spot possible. Betsy
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