Topic: When is it time to call Hospice?

I've read often that Hospice agencies say you should be involved with Hospice as soon as you know you have a terminal condition.  I don't know about that - we all  have a terminal condition and will die sometime due to some cause!  Really though, it's been 10 months since my diagnosis and I've lived a close to normal life.  But things are getting a little harder to handle in the pain department so I'm just curious.  From what I have read, most people call in hospice when a patient has days or weeks left as a prognosis or if they have pain that is completely uncontrolled.

I think right now, my pain can be managed by my oncologist and prescriptions I can take at home, but I'm wondering if there is any other benefit to involving Hospice in your care early?  I certainly don't expect to require end of life intensive care for awhile.  And my oncologist hasn't mentioned the need for referal to Hospice, either.

There is a certain stereotype that Hospice has that makes you believe that they are only called in when a situation is dire and that death is imminent.  I have heard/seen a lot of radio and TV ads recently advising patients to seek Hospice care early and as soon as they receive the news of a terminal illness.

Maybe I'm missing something, but I don't see what else a Hospice agency could do for me right now other than look at my pain relief and I think my Oncologist is doing a good job of staying on top of that.  Any feedback from patients or caretakers on this?

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: When is it time to call Hospice?

Hi Rick. Of course we have been discussing this in our house as well. According to our Oncologist, he will let us know when it is time to call Hospice and he will make the call for us. I think a lot of it just depends how one is doing as far as pain management, eating, and all the "lovely" things that go along with it. I really don't think there is a set rule as to time. I have seen some on this site be tended to over a month on Hospice.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: When is it time to call Hospice?

I hope my sister sees your post - she is a hospice nurse.  I know a lot of what she does - in addition to tending to her patient, making sure they're comfortable, managing pain, etc. - is being there for the family.  Educating them, chatting with them, grief counseling, advice on what to expect as things progress, and just being there for them. She also stays in touch with the patient's doctors, the social workers, etc. - I guess sort of the "point person" in that patient's care.  She's developed some amazing relationships with patients' families over the years, some that still keep in touch with her, and some who she's cared for a family member in the past and they request her for another family member.  (She is amazing.  I could never do what she does.)

I also recall her saying more than once that "this patient shouldn't be on hospice" either because they've got a ways to go yet in this life, or whatever condition that originally put them on hospice improved somewhat.

Kim

~Kim
my mother lost her 16 month battle with CC 9/26/10
"Mothers have as powerful an influence over the welfare of future generations as all other earthly causes combined."

Re: When is it time to call Hospice?

Hi Rick,

I too struggled with this question concerning my Mom's CC.  I didn't want to make Mom think about this before it was necessary nor did I want my Daddy having to cross this bridge.

So what I did was go to Hospice and sat down with them and asked them what did I need to know.  I'm in the medical field and I knew we were getting close to the point that I thought they could be helpful.  (such things as a shower chair). 

They were amazing.  They took my information and started a file on us.  So that when the moment finally arrived, everything was pretty much done. 

I know you aren't in NC but here is the Greensboro link. 

http://hospicegso.org/index.php?option= … ;Itemid=58

There is tons of great information here including a section on how to know when the time is right. 

I would suggest you just make an appointment and go and explain where you are and ask for their suggestions.  They will not press their services on you or pressure you in any way.  You would gain their insight and would be able to make informed opinions.  You would also be able to guide your family in making choices. 

I know how hard this is to think about.  I believe knowledge is power. 

Hang in there!

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: When is it time to call Hospice?

My sister does hospice care up around the Denver area. She tells me that to qualify, so to say, its a diagnosis of 6 months or less left, also, the company she works for, not sure if this is nationwide, the paitent is no longer seeking to have life saving surgery. Pallative chemo is allowed if it is helping to relieve some symptoms.

Hope this gives you a little bit more info.

((((Rick))))