Dr. put in for hospice for hubby but hospice came and said he does not

numb

qualify, that he is still walking (with a walker) and eating. That his Alz. would have to have him bedridden etc. 

They are not taking into account his COPD, Chronic Heart failure, frequent falling, 6 hospitizations in 7 months with septic shock, emergency pacemaker put in, COVID , blood in urine (dr is thinking bladder cancer) and that he  is totally dependent on me for everything.

His memory so much worse and he is hallucinating sometimes. He can sleep 22 hours a day or stay up 22 hours. 

He can still eat ok but is always clearing his throat and he breathes heavily. 

I know a criteria is a six months LE, but read and heard that can be extended numerous times or stopped if patient improves. 

I did not want to wait until he is within days  to get hospice. 

I don't get it. 

M1

Numb, you do not need a doctor's order for hospice. I would,askbfor assessment by another company, and you can call yourself. M

I don't get it either, but don't let them put you off, I would try again.

numb

Thank you ,  I guess the hospice the dr. sent the referral to is the only one that serves the city we live in : (

Cynbar

It's true that a doctor's order is not enough to guarantee hospice admission. Every patient (or potential patient) has a primary diagnosis, also known as a terminal diagnosis. that mainly determines their eligibility. Each diagnosis has a specific list of criteria that qualify that patient for hospice. It sounds like Alzheimer's was the one used for your DH --- you can google "Hospice criteria for dementia or Alzheimer's" or something similar and see how you think he matches up with those. There is some gray area in interpreting some symptoms, and it does seem that not all agencies view things the same way (this is why you occasionally hear that a person is rejected by one hospice company and then accepted by a different one.) You can request another hospice evaluation in a month or two, or if he has a status change (just call the agency, they will get the doctor's order.)  If you know what the criteria are, you may be able to point things out that the nurse may be missing. Good luck, don't give up yet!

dayn2nite2

Did the doctor's office say that this is the only hospice that serves your area?  Are you in a rural area?

Joydean

Numb, please don’t give up! I don’t know what state you are in, but there should be more than one hospice organization there. Different organizations do have different rules. I contacted one here in Texas and they told me they could have someone come out and just be here with him to visit! That would give me a chance to have a couple hours to get out of the house. My husband is in late stage 5. He can do something’s for his self, but can not be left alone. Keep trying! God be with you!

quartlow2

My parents live in TX. My Dad qualified for hospice due to his chronic heart failure. We LOVE our hospice caregivers!

Jo C.

Dear numb; can you share with us what town/city you live in?  One can use Google to find Hospices that serve your zip code area.  You will want to know if the Hospice is accredited.  The larger Hospices seem to do much better than the smaller Mom and Pop ones, (in my own professional and personal experience.)

Each Hospice is different from another and some far more beneficent than others and far more sensible regarding admissions.   To complicate matters more, some intake nurses are far more knowledgable and skilled than others and able to utilize far more common sense. 

There are multiple different diagnoses for admission to Hospice.  Dementia is only one, criteria for dementia is rather outdated and very stringent. Many of the Hospice patients who have dementia are admitted to Hospice with a different diagnosis; often it will be for a co-morbidity and often a combination of different co-morbid diagnoses.

It does not take a doctor's order to contact Hospices and request one's LO be assessed for services.  However; it does take a doctor's order to have Hospice services actually begin. Hospice will often contact the doctor to get the order themselves when they have assessed and plan to admit the patient to service.

What I usually suggest people do, is to contact multiple Hospice entities in their area.  When calling, ask the nice person answering the phone to transfer you to the Supervising RN.  If the nice person asks the purpose of the call, simply say, "It is personal." That should get you to the supervisor.   At that point, I would NOT tell the supervisor that your LO has been refused admission to another Hospice and would not bring that up until or even if asked.

You can inform the supervisor of all of your husband's conditions including the dementia, but do not focus on just the dementia alone and give all symptoms from all conditions he has.  Tell the supervisor that the doctor told you it was time to contact Hospice.  Again; let the supervisor know of ALL of the health care issues for the physical diagnoses including dementia.   Being able to eat should not disqualify him; also being able to take short assisted steps with his walker also should not eliminate him.

The intake paper process takes a very long time with pages of questions and is done in the home; this information is required by Medicare and other insurances.  If asked if he had been turned down by another Hospice, do not expound too much on that.   Simply say that because he is stil able to eat and walk short distances with a walker and often stand-by assistance, they said they could not accept him until bedridden.  Then drop it so it does not cause any ripples and let the RN take the lead in moving on.

If by chance, after the assessment, for some reason he is not accepted into Hospice, the intake RN should inform you about Palliative Care; if not brought up, ask about it.  That is like a pre-hospice. They will have similar services but do not pay for equipment and unlike Hospice, one can still have life saving care, go to hospitals for care, etc.  Once the person has advanced beyond Palliative Care services, the patient is slid into Hospice, often within the same agency.

Worth another try.

Let us know how it is going, we will be thinking of you.

J.

CaringMate

numb...the trials caregivers face with this disease are too numerous to count.
I faced a similar issue regarding receiving in-home hospice care and was told
by hospital personnel (neurologist, neuropsychiatrist, charge nurse, social worker etc.)
that my loved one could not receive hospice because Medicare did not cover in-home 
care for Dementia patients.  They told me that ever since the Affordable Care Act went
into effect in 2014 Dementia patients were denied.  That didn't sit well with me so I
started making calls to various Hospice agencies in my area.  What the hospital staff told
me was repeated by a few of the companies until I spoke with an amazing person at the
largest non-profit Hospice in my community.  I was told the following:  "Have the doctor
change the diagnosis from Dementia to ""Senile Degeneration of the Brain.""  I asked what
was the difference and she said, "there is no difference other than Medicare changed the payment code in 2014 when the ACA went into effect and they will not authorize payment for care if the coding is not correct.  I was shocked and horrified but I thanked her profusely and immediately contacted the hospital staff to arrange for a meeting.  I told them what I was told and asked if they would be willing to "rewrite" the diagnosis and use the appropriate code and they did.  I had Hospice arrive at the lockdown facility where my loved one was under treatment and within 1 hour he was approved for In-Home Hospice.

There is so much misinformation out there and even the people we count on like doctors and hospital personnel don't always have up to date information.  As caregivers so much is required of us and being an advocate for our loved ones is essential if they are going to receive the necessary treatment and care.  If what you are being told doesn't sound right or feel right, go further and pursue other options.  Jo C always provides the best and most accurate advise so you can count on her.  Different States have different rules and provide different modalities regarding what is allowed and what isn't.  I wish you luck in this horrific journey and know that everyone on this site have only the best intentions when providing advise.

Jo C.

No matter the diagnosis, the patient must pretty much meet performance scale criteria for admission and that is "interesting."  There is the Palliative Performance Scale (PPS), the Karnofsky Performance Status Scale, (KPS) and the Functional Assessment Staging  Scale, (FAST) and of course the diagnois itself along with comorbid conditions. There are codes that must be applied for diagnoses and that can take some skill.  You can Google the performance scales to get insight of each.  NOTE:  The RN performing the intake assessment is key to so much.  There is wiggle room depending on the skill of the RN and also on the beneficence of the Hospice itself.  Some are amazing in how they manage, but if you get an RN that is not knowledgable or who is a strict stickler for performance standards, and/or a Hospice that is rigid, it can sometimes be difficult.

When a patient is admitted to Hospice, there are "certification periods."  The first one is for 90 days.  At that time, the patient is re-assessed to ascertain whether the patient continues to meet Hospice criteria.  If so, a second 90 day certification period is assigned.  Thereafter, the patient will be assessed and certified for continued services every 60 days as long as the patient continues to meet Hospice criteria for continued care.

Sometimes a patient will be admitted for the 90 days or whatever, but then stabilizes and Hospice cannot continue services and the patient is discharged.  However, if the patient later has decline, Hospice can come in on service again after performing that admission assessment.

It also must be said that especially in the past there were some Hospices that gamed the system to increase their financial income and this has led to more oversight . . . the bad apple that spoils the barrel sort off thing and led to increased standards that must be met. 

Hospices who are found to  be admitting patients inappropriately or who continue to certify the patient inappropriately can find themselves with harsh penalties and if a pattern, they can lose their Medicare Certification.  

The criteria can be so strict and short sighted if held to absolutes; Hospices are aware of this.  Getting a good RN can be such a blessing, but there are limits:

This is where Palliative Care comes in. In Hospice, the patient has a life expectency of months; in Palliative Care, the life expectancy is expected to be years.

Here are some informative links; the one that fascinated me is the link to Medicare that sets forth the regulations that Hospice must perform to:

Performance Scales Used For Hospice Eligibility For ALL Admission Diagnoses

https://www.johnstonhealth.org/care-treatment/hospice-care/for-providers/patient-eligibility/ 

CMS.gov Hospice Services

https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice

CMS Regulations for Hospices

https://www.cms.gov/regulations-and-guidance/guidance/manuals/downloads/som107ap_m_hospice.pdf

In the CMS Hospice Regulations there is a section on admissions which is interesting to read.

J.