Is this being over-sensitive?

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Outfield
Outfield Member Posts: 1,109
edited June 2014 in Stage III Breast Cancer

It's been a while since I've been on the boards, which is purposeful.  Have been trying to get back to regular life.  On the 18th, it will be 4 years since my diagnosis.  

I'm a member of a committee that approves note templates for my hospital's electronic medical record.  A new note has come up that is apparently going to double as a visit summary note for the patient and also some kind of summary note for the treatment team.  It will automatically include the following:

"Has a referral been made to hospice?"

The person who enters the note will be required to check a "yes" or "no" box, or the note won't complete.  The "yes" or "no" will then appear on the line below the question.

I have argued against this automatic inclusion, because it would have freaked me out of my mind to get something from my oncologist when I was first diagnosed that mentioned any consideration of hospice.  I just think this is a cruel and unnecessary thing to do to most people with early stage cancer in general, not just breast.  I am well aware I was at one end of the anxiety spectrum, so I don't know if this reaction is just me remembering my own high anxiety or if it's reasonable.  

Edited to correct a typo.  Also, I don't mean to get into a discussion of what "early stage" means - I just can't think of another term that more accurately describes a group with cancer that is not at the time thought to be terminal.  Remind me if there is one.

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  • mebmarj
    mebmarj Member Posts: 380
    edited June 2014

    Forgive me if you've mentioned this elsewhere, are there other referrals questions like for PT, OT, ST, home health, specialists, tests?  If so, then hospice is appropriate, but if it's the only question, then I agree it seems odd.

    Might be one of those things "mandated" to be included in the EMR though, so people with our history, but others just don't get it.

    Good luck to you.  Suggest maybe "referrals needed?" so it doesn't freak out someone who reviews their records.

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  • Outfield
    Outfield Member Posts: 1,109
    edited June 2014

    Sorry if I wasn't clear.  This isn't just something going in the EMR, this is going to be printed and given to the patient as sort of a summary.  A person would not have to review their records.  

    I get a "visit summary" with each oncologist visit too (my oncologist is not in the hospital system I work for).

    And no, no specific yes/no questions for PT, OT, other referrals or any tests.  There is a place where it can be checked if a person reported physical or psychological problems, and there would be an opportunity to free text in a plan there.

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  • inks
    inks Member Posts: 746
    edited June 2014

    I was creeped out when they asked for organ donation consent when I went in for my C-section. And when they kept asking about living will and advanced directives several times before surgery and chemo that did not go over well either. It got to the point that my husband told the counselor that I might want to die since I keep coming home with pamphlets about making my last wishes known. So an automatic note about hospice would definetly creep me out.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited June 2014

    I'm Stage IV and believe me, this would creep me out big time. If someone in my situation were thinking of changing tx centers this would definitely add to a vote of "Leave".

    Leah

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  • pip57
    pip57 Member Posts: 12,401
    edited June 2014

    Definitely over the line.   That is a question that should be brought up in a person and sensitive manner at the appropriate time.  

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  • Kicks
    Kicks Member Posts: 4,131
    edited June 2014

    WRONG!   Bottom line is LIFE IS TERMINAL!    WE will ALL die at sometime.  It wasn't my Stage (IIIC) but my DX (IBC) that was primary to me.  Even with those who are Stage IV - that's totally inapproproiate to put out on a 'survey'.

    Stage III is not where anyone needs to run to a hospice.

    Guess these 'pebbles' have no knowledge.

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