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 Things I wish I'd known about hospice ... 
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post Things I wish I'd known about hospice ...
Quick note about hospice on stuff I didn't know until after Jerome was under hospice care.

There are multiple hospice organizations in most large communities or regions. Hospice organizations can be either for-profit (commercial) or nonprofit (charitable). Be cautious and get references on the hospice organizations in your area BEFORE you need them.

Because Medicare and insurance reimbursements for hospice services is the same regardless of whether it is a charitable entity or a commercial operation, profit has to come from somewhere for the latter. In some cases -- not all -- that can mean a lower standard of service or responsiveness in for-profit hospice programs.

Also, it is sometimes easy to confuse a hospice organization with a palliative care organization.

So when doing your research -- BEFORE you need it -- ask whether the organization is a nonprofit or for-profit, and whether it is full hospice or palliative care.

Some hospice facilities are stand-alone centers, some are just a wing or some designated beds in a regular hospital. In the latter, the level of care can be similar to the level of care and attention in just a hospital. I'm glad Jerome was in a calm, quiet, peaceful dedicated hospice center in his last days rather than in a plain old hospital environment.

Good source of referral to the better hospice programs or centers might be your pastor, minister, religious community leader, as they have experienced them all many times while ministering to dying congregants. In fact, it doesn't even have to be your own priest or rabbi. Call around speak to several in your community to get their feedback.

If you have a preference for a certain hospice organization, be sure to tell your LOs physician which one it is you will want to use so that he writes the hospice order to that particular hospice entity.

We lucked out. By chance, our priest asked me just a couple of months before Jerome passed about whether I'd selected a hospice and he told me which one he felt was best. When Jerome's doctor agreed with me that it was time for hospice services, he happened to pick the same one -- he could have easily suggested or assumed we'd use another. And ours happened to be a hospice program run by the Visiting Nurses Association (VNA), which is a charitable agency.

So do your homework about how you will handle the last months, weeks, days when it comes to selecting a hospice organization. A good one will mean a world of difference not just for your LO, but for you and the support you receive as well.

I hope others add additional tips or advice to this thread based on their own hospice experiences.

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Renata (and Jerome-in-Heaven)


Sun Nov 08, 2009 2:37 pm
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Thanks Renata,
Great info. I really have been conflicted about contacting hospice because there are so many here. Someone did give me info on the VNA so they will be my first choice to call.
I still pray for you and Jerome! And of course all those who have been lost in the last year. It's been a doozy.
Judy


Wed Nov 11, 2009 3:00 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Judy,

Great info from Renata. I too wish I had known more about hospice prior to making the decision to choose one. I was fortunate that our ladies club here does charity work and donates to a local hospice, a friend also used that hospice for his parents...but other than that, I would not have known the correct way to look for or choose one. Good thing to look at and something you can check out in advance.

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Dianne C.


Wed Nov 11, 2009 6:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
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My knowledge of hospice is just about zero. My dad is in a fairly rural area, in a town of maybe 15,000 people. Is there likely to be a choice of hospices? I wasn't even aware that there was a choice.....
What are a couple of key things that can be "bad" about certain hospices? I don't even know what questions to ask....
Thanks if you can help.


Fri Jan 22, 2010 6:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Lynn,
Open the phone book in your father's area and see if you have a choice of hospice organizations.
Robin


Fri Jan 22, 2010 7:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
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I looked up the county where he is and there are two. By their web pages I'm getting the idea they are both commercial places, but I will get in touch with both of them and ask the asst'd living place where he is which one they recommend.
I'm not even sure what to ask them! He doesn' really have a clear diagnosis, and when I have looked at some of the "stages" stuff for LBD, it looks like he is in the final stage. When I look at Alz. stages he looks like he's in the final stage there, too. He probably sleeps 15 hours a day and would do more but they won't put him to bed at 6 pm like he wants to do. Any ideas on how long this final stage could last? Is there a range?


Fri Jan 22, 2010 8:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I think the "predictors of survival" article has some range info. The more recent Univ of KY article may have range info too.


Fri Jan 22, 2010 9:44 pm
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