I've had a little experience with this, maybe it will help.  You need a note
in her chart that until you've signed off on the discharge plan, your mother
will not be discharged.  If you can get an MD or a DO to sign a note to that
effect, it may go better for you.

Also, you might want to get your mom switched from an MD to a DO for primary
care.  MDs see themselves in a fight with Death - once the battle seems to
be lost, they're not always the best support.  DOs do a lot of terminal
patients, and they seem to be a little better about coordinating home care,
etc.

Ask to see the discharge coordinator, and then his/her boss, if you don't
get what you need. You will have to repeat yourself, and you will do better
with these people if you keep your vocabulary at an 8th grade level or
lower.  Don't assume they know as much as a professional discharge planner
should know - assume you're trying to get a stranger with no medical
background or understanding of the terms to do what you need.  And if you've
got a good primary care physician or DO, sometimes his/her office staff will
have better luck in dealing with the (dys)functionaries at the hospital.

Best of luck
Dianne
----- Original Message -----
From: Betty Alfred <[log in to unmask]>
Sent: Sunday, June 04, 2000 1:52 AM
Subject: Re: May I vent? Personal/off topic


> Do I still have venting privileges?  You all have been so kind, and I
don't
> want to abuse this.  I really need the support of my buds though, and
"youse
> guys" are my buds.  To tell you the truth, I'm really flipping out over
here.
>
> I appreciate that informing a patient that he is dying has got to be one
of
> the most difficult duties that can befall a doctor; I haven't lost my
> perspective, in fact, I can empathize.
>
> It was hard for me to confirm to my Mother that she was mortally ill with
a
> very short life expectancy.  She honestly didn't know. Being a Christian
> Scientist for 40 + years, she is not familiar with medical matters and
> associated terminology. Metastasis with lymph node involvement meant
nothing
> to her.  She asked my impression yesterday at the hospital, and I was
> straight up.  I could hardly pull the punch after hospice walked in the
door,
> and she had a right to the truth because that's what she wanted.
>
> In this case, the doctor's reluctance to be forthright with me when I
asked
> weeks ago has caused more than a few problems.  I could have arranged for
> Hospice care some time ago, and Mom could have made an informed decision
> about chemotherapy.  She officially stopped that yesterday, but could have
> been spared long before.  She doesn't have to be throwing up everything
she
> tries to eat.  They did know the prognosis but neither of us was ever
> informed.  Moreover, the only thing she can keep down, Ensure light
vanilla,
> has not been made available to her in the hospital and no one has
expressed
> interest in providing it.
>
> I have been providing her nourishment, because the hospital staff has
failed
> to do so!
>
> I didn't even mind being the person who talked about dying with her.  The
> Social Worker didn't do that, she just walked in and dumped on Mom about
> hospice and freaked her out -- totally.  If I had been briefed though, and
if
> they had properly shared this unfortunate news with her, things could have
> gone much more smoothly.
>
> I am here to tell you that this is one "hellova note!"
>
> Now I feel as thought the medical team and hospice is in opposition, and I
> have to stay alert and have my game plan together just to ensure Mom's
proper
> care.  I needed this weekend to rest pending her arrival home, but they
> badgered me Friday night about discharging her yesterday morning.  Hospice
> backed them up even though Mom was clearly not ready to be out of the
> hospital.  She was practically in a stupor because of the meds and didn't
> even know what day it was yesterday.
>
> The hospice nurse left me a boatload of messages on voice mail Friday
night
> about this.  The social worker left a message too.  They really were
trying
> to bully me; I saved the phone messages to hear them again when I am a few
> days away from this occurrence.  I thought I had resolved this Friday
night
> and called Mom to reassure her that she would not be discharged yesterday
> morning.  Hospice told me they were going to provide a contract bed in the
> hospital for Mom until Monday morning.
>
> The next thing I knew, early Saturday morning, Mom called me crying and
said
> a nurse had just come in telling her that she was going to be discharged
in
> an hour and to get ready to go.  I was in a dead sleep when she called, so
> mentally I went from 0 to 60 in about half a second.  We weren't even
going
> to have the proper medical equipment here for her by then.  Hospice knew
that
> because they arranged for its arrival!
>
> Well, Mom is resting comfortably (I hope) in the hospital right now.  She
was
> not discharged, but what I had to go through to keep her in there really
took
> me down physically and emotionally.  They have never listened to me when
I've
> said I can't do many caregiving things because of my own disability.  They
> have continually blown me off, and have continually treated us both with
> blatant condescension!
>
> This is their damned profession!  Why don't they have a better strategy
for
> these eventualities?
>
> I'm glad as hell that they are not firefighters.  I remember how I behaved
in
> medical emergencies when I was a firefigher/EMT, and if you don't mind my
> saying so, some of those people wouldn't make a pimple on my butt (as we
said
> in the firehouse).  Not everyone connected with Mom's care has behaved
> incompetently, but there have been too damned many for my comfort level.
>
> I'm sorry but I'm damned mad tonight.  Damned mad.  My apologies to anyone
on
> the list who is in the medical profession.  This is not a blanket
statement
> about the medical profession.  Almost everyone on my own "medical team" is
> top drawer.
>
> I just wasn't expecting this incredible lack of coordination on my Mom's
> medical team.
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> In a message dated 06/04/2000 3:19:45 AM Eastern Daylight Time,
> [log in to unmask] writes:
>
> > I saw a TV news program that said that many doctors do not tell their
> >  patients how long they will live.  They don't want to say something
that's
> >  not correct.
> >
> >  Seems to me that joy's grandma and betty's Mom have the right to refuse
> >  treatment.
> >
> >  Mag sends hugs to both of you.
> >
>