I am new to this sight but I think it is a great forum for those of us with Cystic Fibrosis to have a discourse. I have enjoyed reading many of the posts and appluad the honesty that many of you speak with.
Recently, a young friend of mine with CF passed away. And I was wondering if any one else was frustrated by the medical industries policy on privacy, at least that is how it is here in California.
Because of privacy concerns the hospital does not inform those of us who are seen in the same clinic that someone has passed on. I understand the need for privacy and that patients have and need privacy rights as well as the fact that hospitals need to protect themselfs from liability but I also believe that we should be able to sign a waiver if we would like for our friends with CF to know of such events-espically those of us who are adults. The CF community is really a small community and I know the first question that came up when I was in clinic was "Who else is in the clinic?" so I knew who I could spend time with while I was being treated. It can be really painful and frustrating to find out weeks or months after the fact that one of my peers had passed on.
The lack of that information takes away our opportunity to attend the funeral or provide an avenue for our grief. Worse than that is running into one of their family members at the mall or sporting event and inquirying about them, only reminding that family member of that pain when they tell you what happened. Anyway I just wanted to see if this was an issue that others had to grapple with.
"Senatorgraham"
"My Friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickenson
Recently, a young friend of mine with CF passed away. And I was wondering if any one else was frustrated by the medical industries policy on privacy, at least that is how it is here in California.
Because of privacy concerns the hospital does not inform those of us who are seen in the same clinic that someone has passed on. I understand the need for privacy and that patients have and need privacy rights as well as the fact that hospitals need to protect themselfs from liability but I also believe that we should be able to sign a waiver if we would like for our friends with CF to know of such events-espically those of us who are adults. The CF community is really a small community and I know the first question that came up when I was in clinic was "Who else is in the clinic?" so I knew who I could spend time with while I was being treated. It can be really painful and frustrating to find out weeks or months after the fact that one of my peers had passed on.
The lack of that information takes away our opportunity to attend the funeral or provide an avenue for our grief. Worse than that is running into one of their family members at the mall or sporting event and inquirying about them, only reminding that family member of that pain when they tell you what happened. Anyway I just wanted to see if this was an issue that others had to grapple with.
"Senatorgraham"
"My Friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickenson