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krusso Asked August 2013

Is it appropriate for the DON to "predict" how long a patient will live?

At the beginning of the year I found out Gulfshore increased mom's Exelon patch to 9 mg from a Humana statement - n.h. NEVER told me! AS a result, I hired a Nurse Care Manager to advocate for mom. At the introductory care plan meeting I guess the home felt "threatened" becasuse almost the entire staff were there & I was the one threatened!!! Anyway, Director of Nursing, said "she could live another 20 yrs"!!! I heard that & realized I may be doing this for the next 20 yrs - both wonderful news AND not so wonderful - I love mom more than life itself but that would make her about 115 before she passes & I'll be working my butt off for the next 20 yrs. I know some people DO live that long, but I really think he just blurted that out & depending on where I (or anyone) am in the caregiving journey, I could've went home & committed suicide!!! I just think he could've left that out!!! The latest care plan meeting was worse, though. Even my Nurse Manager said "my uncle lived to 120" & ALL I said was I hope John is right about mom living 20 more yrs - next time I'll keep my mouth SHUT - they were all saying my grandmother lived, etc., etc. Thanks for listening.

krusso Aug 2013
OldCodger2 - how do I log in as a doctor - I couldn't find where you click on that you're a physician.

CarolLynn Aug 2013
Oh, Karen, like you don't need this stress! OMG! They just seem thoughtless!!

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oldcodger2 Aug 2013
go to this site and check that you are a physician (even if you are not - it won't give you access to the questions otherwise.) Answer the questions as best and accurately as you can. You will get a 'general' idea of how long the person has left. Of course, a tough constitution and love also come into bearing here. No one actually KNOWS how long a person will live. But, saying a 95 year old will live another 20 years was cruel, I think. Get a NEW case manager STAT. One who will support you and your mom.

krusso Aug 2013
Well, really, I mean I don't think it was even ethical for him to just arbitrarily say that! Like I said, if I were already doing this for a few yrs I would've just gone home & committed suicide! Ugh - Exelon patch is to "help" her memory - she's 94 & "content" at this facility (likes her aides, etc.), bu yes there are other homes in our area but she likes it there so...I should also mention the DON asked me to LEAVE (yep, to leave)the room so he could talk PRIVATELY with my then-care managers (they were a husband/wife team - since then I had to hire another Nurse Care Mgr - Gail - she's good but it's not the same as Bob & Jackie),but anyway, he basically had a 15 min "closed door session" w/MY hires that I wasn't even part of!!! And you should see the paperwork mom "signed" - NO date, NOTHING to indicate it's even Gulfshore's or Mom's for that matter - ALL the paperwork has is her initials "O.S." NOTHING else - that's why I had a social security rep payee nightmare - since she "signed" a form that allowed them to apply to be her rep payee - ugh - I HATE that place!!!Even Gail, for that matter! When those women get to a certain topic they talk within themselves & it's like I'm not even there - it becomes a "chat" session!

Spoony Aug 2013
I think that the DON was trying to discourage you from hiring a Nurse Care Manager. The "prediction" was a plain speculation on his part, and a comment about someone's uncle allegedly living to the age of 120 is a plain bs. The predicted longevity is totally irrelevant to the care plan. I would tell him straight out to be objective which is what care plan should be anyway. And to refrain from making irrelevant statements.

I feel for you, I think that the above comment was totally inappropriate and even unethical. As far as Exelon patch dose, you might want to discuss it with your mom's doctor. Also discuss the possibility of the doc's office notifying you about the changes in meds since you are POA.

Considering how you felt at the moment, I wouldn't be shy at telling the DOA to refrain from irrelevant comments in the future. I would even put it in writing, and mention that it is highly insensitive and unethical. NH employees have to take care of your mom, but have no business speculating about something that is clearly not their field. You might want to google "nursing diagnosis", but longevity isn't one of them.

CarolLynn Aug 2013
corrections...

is that NURSING HOME the only place available

they WEREN'T capable of thinking compassionately

CarolLynn Aug 2013
Hi Karen - Carol here - I can't believe YOUR nurse manager, you pay from your own pocket (!) would go along with something so preposterous as a 95 year old (isn't your mom now 95?) living 20 years. #1, how unlikely. #2, SHE knows your administrative issues with them and basically kind of sided with them anyway? and #3, why couldn't they have been realistic, even if they were trying to drive some of your point home, and said your mom could live 5 or 8 more years?

Karen, they are intimidating you and putting you down. Is that you're sitting home the only place it's available? I mean, what's going on? They ALL should be supporting you, not making you feel worse, but psychologically they're probably doing it because they felt threatened by you and that was probably the only stupid way they could "get to you". They certainly didn't tell you that because you had been sitting around talking about hoping your mom would die. I know you don't feel that way - that you want her here as long as you can have her, but who in their right mind would think that could mean living until 115, when virtually no one does that.

Those comments at that meeting remind me about times when a group of people sit around and talk about tragic accidents. Everyone jumps in, like Lord of the Flies, and comes up with their most gruesome tale. I think you're paid nurse manager just chimed in along with the rest of the idiots, led by the nose, and nobody had their thinking cap on. They what capable of thinking compassionately because they exist in their own little world. Yikes!

haried2afrazzle Aug 2013
Krusso - Your comment regarding care facility staff acting "threatened" really struck a chord with me; albeit it with a different situation (indirectly relating to a financial dispute). In our case the administrator had 3 or 4 other high-level employees (including the DON) in her office to witness and advocate for their side of things; while I was Mom's lone representative without any back-up. :( Sometimes an adversarial situation is just *presumed* on the part of the care facility; or they'll make it into one by being unwilling to compromise and attempting to manipulate people by capitalizing on their specialized experience and knowledge in an area where few resident families know their official legal rights or options (similar to the classic story of the stereotypical auto repair garage taking advantage of a female who is not mechanically-savvy). I guess in that sense they're not much different from any other for-profit business.

You didn't clarify how old your mom is, but I would think anyone that lives past a hundred -- much less to 115 or 120 -- would be an *Extreme* rarity. I suspect "John" was indulging in a little attempt at psychological manipulation through use of hyperbole.

What is the issue here? Pardon my relative lack of familiarity with specific elder pharmaceuticals; but what is an "Exelon" patch? what does it do, and what are the implications of the dosage being raised that high? Whatever a "Nurse Care Manager" is, it's fortunate that you have the resources to hire someone professional, who knows how to navigate the minefield, and who can go to bat for you.

In my own experience, I personally have found it extremely frustrating how facilities apparently feel free to make medical decisions regarding a (dementia) resident patient's pharmaceutical regimen without any consideration to the family (or legal designated HPOA/DPOA) whatsoever. You communicate your family's preferences, along with concerns about significant side-effects, chemical dependency, alternative therapies and other important related issues, while they smile and nod their heads, but nothing ever changes; and it's like constantly pulling teeth to be kept in the informational loop. :( I honestly don't get it, either.

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