I just talked to my father pulmonary doctor and he is at the point that there is nothing much more that can be done. The doctor is trying some other things but thinks when we reach a plateau I should consider hospice care. I'm not really sure what hospice is. I'm scare they "help" people die and I do not what that. Does Medicare cover hospice? Is home hospice available and is that good?
I'd appreciate some information on hospice from those who have are are experiencing it.
Thank you
I recommend a non-profit hospice if you have access to one, and if you have choices, ask for references from families to help you choose. Most hospices have many, many happy families who can share their experiences.
They help people stay comfortable during the death process. They have a record a helping some people live longer since their medications are better managed and they are out of pain. Many, many people wish they'd called hospice before they did, once they see the improvement in the wellbeing of the ill person. They give medications for pain, and all medications have side effects. That's a given.
Both of my parents rallied under hospice care, because their pain was well managed. Hospice works with the other health providers to give the best care possible to the patient. They have a chaplain, counseling for the families going through the process, as well as the ill person if he or she wants it. They also have grief support groups for family after care (if you want it).
Hospice care is covered by Medicare, under most circumstances, and provides care wherever the person lives - in their home, a nursing home, assisted living - home is home.
I can say this: my family knows I'd want hospice care if I am ever in a situation where I am terminal and in pain. I want to die with as much dignity as I can have, and have a little pain as possible so I can enjoy the people who love me.
Take care of yourself, too.
Carol
My MIL just went into hospice on Monday. She was in the hospital recovering from another broken hip and it's related surgery. She has other health related issues also. The turning point for her was that she would not swallow and her vital organs are not responding to the meds. Her MD felt hospice was best and her son's were all in agreement. They are a pretty realistic bunch.Probably a week or so for her at her rate of decline.
Her hospice is it's own free-standing facility with it's own staff. She is on "pallative" care - she is given pain medication to make her more comfortable but
no medications to "cure" her and no extraordinary measures are to be done. Her room is small with a monitor. It seems they check in on her about every 3 hrs. Last night the night nurse called to give the day's update. Very kind and caring.
As SS said, hospice care will require you to sign an DNR and some have other advance directives (AD) required. For at home hospice the DNR is needed so that if EMS is called, the EMS doesn't start things that could "cure" . Also you will need to have on file the funeral home contact information. If you haven't done those things, you will need to within short order.
Medicare rules allow & pay for hospice for 90 cycles. You get two 90 days cycles per the MD's diagnosis. After those 2 periods, there is a 60 day waiver that can be refiled. The hospice should explain all this to you. Hospice is considered a "hospital related stay" for Medicare Part A payment. In order to be considered for hospice, the disease needs to be terminal with 6 months or less life expectancy. Coma patients usually don't qualify for hospice as it's is not designed for their care level they would go to a long term care facility not hospice.
All the caregivers need to go thru the hospice for Medicare to pay. VITAS and
Compassus are 2 of the bigger hospice groups in the US. They both have websites with info on what hospice is.
For home based hospice, Medicare will pay for short-term stay in a hospice facility "respite care" so the person who is a home with the hospice patient gets a few days "off". If you decide on home hospice, this is an important thing to do to keep from you having caregiver burn-out.
None of this is easy. The real ? is do you accept that you do not want any cures or extraordinary measures taken for your dad and that he is terminal.Good luck.
The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss more than 10% within six months).
The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. The Mitchell study (2004) developed and then validated the MRI by examining data from over 11,000 newly admitted nursing home patients. Among patients with a MRI score of more than 12, 70% died within 6 months (mean survival time not reported). Compared to FAST Stage 7, the MRI had greater predictive value of six month prognosis. The MRI as only been evaluated in newly admitted nursing home residents; it has yet to be validated in the community setting or for previously established long-term nursing home residents.
Functional Assessment Staging Test (FAST)
Stages:
1. No difficulties;
2. Subjective forgetfulness;
3. Decreased job functioning and organizational capacity;
4. Difficulty with complex tasks and instrumental ADLs;
5. Requires supervision with ADLs;
6. Impaired ADLs, with incontinence;
7. A. Ability to speak limited to six words &7 B. Ability to speak limited to single word
& 7C. Loss of ambulation
& 7 D. Inability to sit & 7 E. Inability to smile &
7 F. Inability to hold head up
.
Mortality Risk Index Score (Mitchell)
Points & risk:
1.9 points complete dependence with ADLs;
1.9 points male gender; 1.7 cancer; 1.6 Congestive heart failure; 1.5 Bowel incontinence; 1.6 O2 therapy needed w/in 14 days;
1.5 Shortness of breath; 1.5 less than 25% of food eaten at most meals;
1.5 Unstable medical condition; 1.5 Bedfast; 1.4 Age over 83 years;
1.4 Not awake most of the day. A MRI score of 6 - 8 has a 40% risk of death w/in 6 months while a score of 12 has a 70% risk of death w/in 6 months.
They want you to sign a DNR and that scared me, but it can be revoked if you want to at any time. My Mom's dr is a young woman dr, so maybe the old school doctors don't know that hospice is covered by medicare, and can provide in home help for as long as it is needed. I sound like I work for hospice. but I'm just a regular caregiver who intends to let my Mom stay in her home.
But more importantly, once he is accepted on hospice, you can get "respite" care for yourself to get the break from caregiving you need. One thing I;d suggest is to pick a hospice group you go with has an active relationship with a nursing home OR has an actual hospice facility - either way there is a facility he can go to for the respite stay and the care & paperwork runs smoother between being at home and being at a facility.
My gut feeling is that once you have a break, you will be in a better frame of mind to perhaps more clearly evaluate whether the time has come for your DH to be in a facility, like a NH, where they can tend to his needs at the higher level of care than you can at home. This may be the best thing for your own health.
SS - this is tough as Medicare guidelines on hospice are pretty strict on medical necessity. Getting another evaluation is critical to having him stay on hospice.
It's interesting re-reading my post from May, 2011 on hospice with my MIL. Since then, I have gone through trying to get my mom on hospice - she had a couple of TIA's and emergency room runs last Fall related to the TIA's. ,Thought she was going to die and she looked very, very bad. She got evaluated for hospice and passed the initial review, then 2 weeks later she somewhat rebounded (was able to sit up without help and eat without help) as so her MD at the NH refused to sign off for hospice even though he put in the initial request for hospice and the hospice MD (not the same MD and that is how hospice is run) would signed off on her. Now I moved my mom to a new NH this year, her health is better than it was last Fall and the MD at the new NH signed off for her to be on hospice! She's with VITAS and they are great. My mom is pretty old - mid 90's - at that is a big factor in having her on hospice even though her overall health and activity level is amazingly good. My point is don't take the first answer as law, there are ways around qualifying for services, some agencies and health care providers are more creative in working with families to get acceptance done. Good luck.
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