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Hospice - King Rat
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My mom, step-father, myself, my brother, and a woman from mom's church met with a representative from hospice last Wednesday.

She was there for 2 hours. We learned very very little that we didn't already know. The woman was not very organized. Actually, she was organized for a completely different kind of patient. Most people who they meet with have very little idea what hospice does. So she was expecting to explain that. She spent the majority of the time asking each of us what we did for my mom.

She only answered in a general way my mom's questions, which she didn't get to ask until nearly the end.

Mom has heard complaint of losing autonomy from other people in her support group. Nothing specific though. The rep answered this concern with of course you get to participate in all decisions. Which is not the answer my mom wanted to hear. She wants to know that she decides. Not that she participates. She came away with the impression that her choice if she disagrees with hospice's ideas is to go with it or to drop out. Mom doesn't want a repeat of the debacle that was the ALS clinic at Virginia Mason, where they argued with her over her refusal to take a medication.

A little interlude here. My mom isn't getting that great of care for her ALS. Her MD is great but he doesn't have the depth of knowledge in ALS. The situation is not really the fault of the doctors. My mom is choosing this path. She doesn't want to see the specialists in Seattle. She is fighting hospice. She doesn't want to go back to her RT. She fought the speech therapist. She doesn't want an OT to come to the house. In short, she's being difficult. (She's not fighting everything though.) Now you know where I get it from. Although I think she's making some bad choices, they are her choices. I support her right to make bad choices. I will not get in her face about any of them. Gentle persuasion or coaxing is the most I will employ.

She doesn't want hospice because she doesn't want to fight them, and she thinks she will have to. The rep didn't create that impression, her friends in support group did. But the rep didn't dispel it either. She was unprepared and unorganized, and her coming with a plan to talk about the things most people want to know with no backup just reinforced to my mom that they have a one size fits all way of doing things.

Her only specific concern to me about hospice is that she doesn't want to take any medication that will sedate her or otherwise dull her awareness. I don't think hospice will force her to do that, though there's the possibility they will urge her more than she wants to be urged.

She's going to ask the complainers at support group for more specifics, so we can clarify with hospice if these are really issues or not. But it's three and a half weeks until the next meeting.

She says she'll hire someone to help with grooming/feeding/etc. But she's balking essentially at the nursing aspect.

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7 comments or Leave a comment
burgunder From: burgunder Date: February 25th, 2008 06:44 am (UTC) (Link)
I support her right to make bad choices.

You rule.

I hope the support group has more specifics and the hospice has some better responses, but I've got to say, I'm with your mom - that rep. needed to be a lot more able to autonomously answer questions if she's in that much of an ambassadorial type of position. It's not like they're selling used cars, but man, certain aspects of western medicine combined with bureaucratic obfuscation make me feel that way sometimes. A's mom's at-home nurse, during the interview meet-n-greet process, kept pulling this some kind of vaguery and evasion and it's just gross. Do the people in these positions get so callous that they forget they have a human being with real concerns who needs those concerns addressed? Not that have a ton of anecdotal data, but what I do have seems to constitute a hazy pattern of intrepid apathy.
gkr From: gkr Date: February 25th, 2008 07:08 am (UTC) (Link)
It's not a matter of them being callous. Remember, most people really have pretty shitty people skills. This reps' people skills weren't bad, but she didn't have the deft touch needed for my mom. What skill she has is trained to respond to their most common issues, not my mom's. It would sure be nice if she were better, but this is not realistic. There's only so many people out there with such skills, and they aren't going to be working in low-paying hospice outreach jobs.
gargoylettelc From: gargoylettelc Date: February 25th, 2008 07:01 am (UTC) (Link)
Wow, that's unfortunate. It's hard to watch someone make bad choices. I see consistently our hospice nurses always put the needs of the patient 1st, and we usually focus care on patient goals. Saying that she gets to 'participate' in her care, may have been poor wording on that representative's part. Was she an actual clinician, or just someone who screens the cases? I would ask about why she didn't have your mother's correct clinical info. (I personally often forget R/L if I've gotten a ton of new folks and it's been a week or if I didn't evaluate that person, but can always go look on the computer if I'm not sure) I can honestly say that I've NEVER seen any of our nurses shove their decision for care on anyone, and would like to find it hard to believe that any other agency would do that. They basically work toward comfort care, if that's what your mother wants, and I think they could be helpful in what she is experiencing now. Maybe she just needs O2, but she would have to go in for that. Maybe discussing that eval for X could make her more comfortable, might make her reconsider.
gkr From: gkr Date: February 25th, 2008 07:17 am (UTC) (Link)
She said her position was as a 'social worker.' I don't know how much clinical information was given to them. They were referred by her general practitioner, who as I've noted is not an ALS specialist.

I totally think hospice could be helpful now. I may actually call them myself and see if I can talk with her to make this easier. Unfortunately, I don't know if there's a HIPAA release on file with them to allow them to talk specifics with me. There is with every other medical person we've seen, but since this was the first meeting, I'm not sure.
bork From: bork Date: February 25th, 2008 07:19 am (UTC) (Link)
When I talked to Hospice with my mom, they did not restrict information at all - and I was two time zones away. HIPAA was never even mentioned.

I would totally encourage you to call them. And I've been thinking of you and your mom.
gargoylettelc From: gargoylettelc Date: February 25th, 2008 04:09 pm (UTC) (Link)
If HIPPA is a problem, they will tell you. You are however free to express your concerns on the case and what concerns Mom had, but they may not be able to give you information, so I too encourage you to call. A social worker is NOT going to be the nurses who will be providing the care the would more directly effect your mother. MSWs would work on getting further support in the home, help fill out a POLST if you haven't done so already, and perhaps also add yourself as a DPOA so there are no further issues with HIPPA. She may just be a screener, and you can ask if she'd be the one coming out. If you don't like her, ask for someone else. Also, typically, there aren't ALS specialist, and a neurologist or a physiatrist would follow the case, and are educated in many disorders--progressive neurological disorders, and well qualified to work with your mother. Also, if you have questions about what's written above, you can contact me directly. My thoughts are with you and Mom!
gearhead1 From: gearhead1 Date: February 27th, 2008 06:06 pm (UTC) (Link)
I hope that your mom :-)... can see through the red tape and use hospice as she sees fit. for example, she could use the in home care but decline other aspects that she does not care for.
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