hospice question

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Dlv
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/31/2007 7:28 AM (GMT -7)   
Will someone explain hospice and how it works for me?  I assume a dr refers you, but when does that happen?  Not that I'm ready for hospice but it has come up in some conversations. Thanks dlv 

myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/31/2007 3:02 PM (GMT -7)   

hi div, im pretty sure that you have to have the dr give the order, because we asked the dr when my father was in the hospital, im sure that he did. hospice is for the whole family not just for your father, the caregivers need help and sleep to. have you asked your father if he wants hospice in ? i cant see why your dr wouldnt order some help for you and your mother. i can tell you by experience that some drs just do not have what it takes when it comes to bed side manners. i think they need to learn that in medical school!!! the scary part is that some of them just dont care when the person is older, i went through it with my mother 12 years ago and i just went through it with my father, its very sad, but its the truth. the dr my father had was a m.d. internal medicine, but he knew everything there was to know about cirrohsis because his father had the same thing so he studied it very well. this disease that your father has will ware you and your mother out in a manner of a few weeks so tell the dr to get on the ball and dont waste any more time. sometimes you just have to get mad untill people hear you, good luck and god bless.

you are in my thoughts, please take care.

myfathers child yeah annette

                                                                                

 

 


Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 1/31/2007 4:35 PM (GMT -7)   
I'm no expert, so I may get some things wrong, but this is my experience.
 
Hospice is a federally mandated program for persons with a limited life expectancy. Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The patient's DR/DRs do need to OK a Hospice organization to evaluate the patient's appropriateness to Hospice. If you want to talk to more than one Hospice organization, the DR has to OK each evaluation.
 
There may be various Hospice organizations covering a single service area. If you are lucky enough to be in that position, you should interview more than one, and ask detailed questions about the nature and frequency of care you would receive. I interviewed 3 for my husband, who is now in the program, and found vast differences. Ask specific questions about the type of nursing/medical procedures you are likely to want to have. One hospice might consider procedure X to be palliative while another hospice considers that same procedure curative. For example, I interviewed one that would not authorize my husband to have his blood drawn for evaluation, saying that was an invasive procedure. My husband gets his blood drawn every week to check his liver, kidney, and electrolyte values, so that we can appropriately adjust his medications. One hospice might provide a personal aide 5 days a week; another 3 days a week.
 
If a patient is accepted into Hospice, they are cared for (under their terminal diagnosis) regardless of ability to pay. If there is any insurance involved (Medicare, Medicaid, or private), Hospice will bill those sources for their services. Hospice will provide all medications prescribed for the terminal diagnosis or needed for palliative care, many "soft" supplies (such as latex gloves and duoderm bandages for pressure sores), necessary durable medical equipment (hospital bed, walker, wheelchair, cane). All this is provided without cost to the patient, even if the patient has no insurance. (Many Hospices have private donations to finance their "charity" care.) The Hospice does not provide coverage for conditions unrelated to the terminal diagnosis. For example, if my husband were to fall and break his leg, Hospice doesn't cover that.
 
Many hospices provide home-based serevices, but some have their own facilities. Most have contractual arrangements with facilities (hospitals and long-term care homes) if those services are needed. Most Hospices work to "back up" friends or family members, who provides the primary caregiving (unless there are no primary caregivers).  
 
A Hospice patient is initially "certified" for, I think,  9 months, and may be "certified" for a second 9-month period. After that  "certification" comes in 6-month increments. Certification subsequent to the initial one involves consensus among the Hospice team, in consultation with the primary caregivers and the patient's DR/DRs, that the person continues to qualify.
 
You can withdraw from Hospice at any time. You may be releaased from Hospice if you seek "currative" treatment, depending on how your Hospice defines that. For example, one Hospice told me that anytime my husband went into a hospital, he would be discharged from Hospice. The one I chose had a different philosophy. I gave them the example of spontaneous bacterial peritonitis and the need for IV antibiotics and ICU care. Our Hospice agreed that would not be "currative" of his terminal disgnosis, but simply intended to make him comfortable. Depending on the specifics, our Hospice might require him to withdraw, so that traditional Medicare  would cover the cost or they might keep him under Hospice care while in ICU and pay for his stay.
 
I was told that if a patient withdraws from or is released from Hospice enough times, the Hospice may consider that the patient is seeking "a cure" and refuse to recertify the patient. Once again, this is a matter of philosophy for a particular Hospice and a particular diagnosis.
 
I had one Hospice tell me that seeking to be on a liver transplant list constitutes a currative path and they would discharge Jim. The one he is with told me that simply seeking to be listed and being listed is not currative; a currative path does not occur until the call comes in that a liver is available and we get in the car to go to the transplant center.
 
 
Take care and good luck,
 
Venita
 
 
 
 
 
 

Venita and Jim
Wlmington DE

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/31/2007 4:50 PM (GMT -7)   
Venita, that was a very informative post. Thank you! While I am not in need of hospice at this time, I feel I may be somewhere down the road. One thing I noticed that is different from what I was told here in NE FLA is that the patient must have 6 months or less to live, in the referring doctor's learned assessment. Of course, that may have changed, or the time may be different in different states. I can see where one may have to convince hospice that certain hospitalizatons or procedures are palliative rather than curative.

Hugs,
Connie

Jim's wife
Regular Member


Date Joined Dec 2006
Total Posts : 31
   Posted 2/1/2007 4:02 AM (GMT -7)   

Connie,

I believe you are right about the DRs assessment of a 6 month life expectancy, regardless of state. We didn't have to pass that hurdle because when Jim was first evaluated, he was in ICU with a platelet count of 4000 with no hope of living. He is much much improved now over that and hoping to start spending a few days a week at our local senior center next week.

However, the way I understand, life expectation is flexible because it is an evaluation based on DX and clinical symptoms, not a certainty (miracles and statistical quirks can happen), and patients can remain in Hospice even though they are still living at the end of 6 months, provided they remain Hospice eligible at the next assessment.

NE FLA is a nice place to be. I read that the Mayo in Jacksonville has the highest rate and shortest wait time for liver transplants.

Venita


Venita and Jim
Wlmington DE

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/1/2007 10:45 AM (GMT -7)   

Hi,

Others have provided a very detailed description of hospice services. The only thing I want to add is about the recertification process my husband has to go through because he is on Medicare.

Initial diagnosis is life expectancy of six months or less. If our loved one lives beyond that time frame it is called extended prognosis. During the first six months with hospice the patient is recertified every three months; after reaching the six month mark recertification is every sixty days. There is no limit as to how long someone can remain with hospice as long as they are still considered terminal.

Gene was just recertified for the next sixty days after a close call where for the second time, Hospice wanted to discharge Gene. Hospice checked with his private Doctor and looked at Gene's medical decline during the past two months and appologized for even considering his discharge. It's scary but they cannot go by anything other than each certification period.

My husband is on rotating antibiotics without which he would be dead in a week or two as his liver no longer processes toxins. This is life extending and something many hospices wouldn't allow. We are with Vitas which allows Gene to have his antibiotics as long as we get them ourselves. But it works.

We are at the three year mark since Gene was diagnosed with esophageal cancer. Gene's liver was too fragile so surgery, Chemo and/or radiation. He has been back in hospice for ten months. It pains me to watch his decline but I am so appreciative of the extra time we've had.

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/2/2007 8:41 PM (GMT -7)   
Barb, thank you for the additional information. I know that I am alive and doing very well, thanks to fast and aggressive treatment at Mayo.

"I read that the Mayo in Jacksonville has the highest rate and shortest wait time for liver transplants."
Venita, yes, this is true. I originally went to them because I thought I would need a transplant; however, my liver function was still good and the cancer had metastasized to my inferior vena cava, so I wasn't eligible. People come from all over the world to be placed on their transplant list. They do everything fast there.

Connie

Dellalita
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 8/9/2011 2:46 PM (GMT -7)   
Hi,
I have some information that may be helpful to you... hospice is getting so much easier for people to get help sooner than the last 6 months.. The idea is for them to come in early so they can get to know you and be able to predict any pain, or issues before they arise. They are like family, and the spiritual and emotional support they offer is something i wish i had taken advantage of long before 6 months. the time we were involved with hospice they got to know our family and how we wanted things done. This is so important for your family there taking care of you.. they need support too. its never to early to call and ask for help.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/9/2011 3:00 PM (GMT -7)   

Dellalita, welcome to the forum.  You picked up and posted to a very old thread (from 4 yrs. ago), though the information is still appreciated.  However, if you or a family member have liver disease, it would be best for you to start a new thread describing your situation and introducing yourself to the other members (click on New Topic instead of Reply.)

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland
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