Not Accepted into Hospice

Malka

Hi,

So, my dad, who last week, couldn't move in bed, was NOT accepted into hospice. He was too well today?

I really don't understand and I am very upset and aggravated. I have been anguishing over this since last week. Don't the hospice people understand that with Alzheimer's one day can be good and the next bad? I think our health care in the country is broken and my generation is the one suffering most.

Again, thank you all for your answers and support,

Maureen

Jo C.

Maureen, do not despair.

Hospices are very different from one another; some are far more beneficent than others.   You need to call a different Hospice and ask them to assess your Loved One.  Do not tell them you had been turned down by another unless you are asked; and if asked, be honest.

While patients are supposed to have six months or less to live to receive Hospice care, when dementia is in the mix, Hospice will work with that an slide the time.

There are Intake nurses that come out and do evaluations. Some are really good at doing that, others are not.  A patient must fit a particular diagnostic set criteria to be admitted to Hospice service  There are different diagnoses that can be used.  An experienced Intake Nurse will know how to apply the different criteria as best can.  IF an intake nurse tries to use the diagnosis of "Dementia" to admit a patient to service, that is an extremely difficult set of criteria to use - many do not fit that criteria; it is sometimes not  used as a primary diagnosis for Hospice admission if there are other conditions present that can be used..  Lesser experienced intake staff may not be as aware.

Other Intake Nurses know to use a different set of criteria related to a different condition the patient may have which will support being admitted to Hospice. 

SO . . .  do make another call to a different Hospice.  If there is a free standing one not run by a hospital, all the better can sometimes be more accepting.  AND . . . the larger Hospices that are not small Mom and Pop ones are also able to admit more patients in an appropriate manner.

From the descriptions of your father's condition that you gave in your prior Thread, it certainly did sound as though Hospice criteria would be met. If your father has had a huge improvement and no longer has those problem issues, then that could possibly be a problem. If he has other co-commitant conditions such as Congestive Heart Failure, Diabetes, or other physical conditions that too is important for getting onto Hospice service. 

So . . onward you go, and when the Intake Nurse is there,  do not volunteer lots of positive information; let them assess and you can and should contribute the negatives such as a lack of eating, drinking, constipation, not waking up much of the time, if he has lost weight over the last weeks or so, that too is very relevant, etc., etc.; everything that has been a negative.  Combined, that will give them a hook to hang their hat on so to speak.

Just for your information, here is a list of criteria for admission to Hospice with a diagnosis of dementia.  (I am not recommending Vitas Hospice, they just had good information.)

https://www.vitas.com/for-healthcare-professionals/hospice-and-palliative-care-eligibility-guidelines/hospice-eligibility-guidelines/alzheimers-and-dementia

Good luck and please let us know how it goes. 

J.

May flowers

Don’t give up hope, like Jo said. You may have just gotten a bad apple. My LO was having a good day when he was accepted into hospice, but I described his worst days. The weight loss was a big deal. Also, was his caregiver there during the evaluation? If so, I’d consider not having her there for the next assessment.

Jo C.

Good input from May Flowers  - do not have care aide there - the more help they see may affect decision making.  Shouldn't; but could happen unconsciously.

J.

Malka

My friend suggested I keep a journal to track his bad days. I also didn't have his labs which would show his weight loss. I didn't realize I had to prep for this evaluation, so now I know. I guess I should have known, but since the doctor suggested it I thought it was a done deal.

If anyone has any other suggestions, let me know. I am willing to start doing it. Tonight when I spoke to him he insisted that that the year was 2003. Do delusions count? How many points do I need to get him accepted.

BassetHoundAnn

Hi, Malka, I can certainly sympathize with your frustration as my mom was rejected for hospice care a few weeks ago because she still speaks in sentences. Sometimes. Although they're the same sentences repeated. But she was accepted for hospice coverage last week because her weight had dropped a few pounds since her last evaluation. 

I've read that the criterion for accepting ALZ patients into hospice care can be capricious and sometimes seem crazy. 

At my mom's memory care I'm told there are residents who've been rejected as many as four times for hospice care until they're finally admitted. The trick is to keep trying. 

There was an informative article in the Washington Post a few weeks ago about how the payment criterion for hospice providers under Medicare badly needs to be updated for Alzheimer's sufferers because progression of the disease is so different from that of cancer patients. Patients often stabilize or temporarily improve. When that happens hospice providers can be penalized by Medicare if they have too many patients that fall out of the strict Medicare criterion. It can also be very difficult to tell with certainty when an ALZ sufferer is nearing death. 

This article may be behind a pay wall. If so anyone who would like to read it can send me a PM with your e-mail address and I'll "gift" you the article with a link from my WP account. I can "gift" up to ten article links a month. 

https://www.washingtonpost.com/health/2022/03/26/medicare-alzheimers-dementia-hospice/

I encourage you to have your dad re-evaluated in a few weeks. You might also contact his doctor and suggest that the doctor send a strong recommendation to the hospice. I've heard that that helps. Good luck! And please tell us how things are going. 

Phoenix1966

Here’s a link to read BassetHoundAnn’s article(only photos will not be visible):

https://web.archive.org/web/20220402123433/https://www.washingtonpost.com/health/2022/03/26/medicare-alzheimers-dementia-hospice/

From my own hospice experience, my grandmother was rejected the first time, but accepted a month later at a second evaluation mostly because of her weight loss which I made sure to emphasize(I had copies of her medical records from the last year with me, where she had gone from 155 to 123 to 118 to 110). She also suffered from high blood pressure and AFib. But I know it was the weight loss that was the deciding factor. 

windyshores

Same thing for my mother with two hospices: she is in bed, not eating, for days and then they come to evaluate her on the one day she is up! Good tip on alerting them to weight loss, which has certainly happened.

Last week I met with PCP and the hospice affiliated with that health care system is ready to take her. Sometimes the PCP can help.

My mother has been on hospice twice in the past. They put the diagnosis as dementia but once she had possible colon cancer (turned out to be diverticulitis) and once suspected brain bleed. This time around the same hospice that took her twice before, when she was healthier than now, told me there was no diagnosis they could use!

My suspicion is that COVID has affected hospice availability. Perhaps less staff, less money, fewer volunteers to match government funding and so on.  The non-profit that rejected my mother is, I have heard from a social worker friend, in relative chaos right now.

The hospice that accepted my mother is part of a hospital system so less stressed financially. That said, it offers fewer services than the non-profit. No daily aide, and many providers (RN's) are not able to prescribe, whereas the non-profit nurses are all NP's.

I would say: keep trying!

mommyandme (m&m)

Besides journaling, you might take videos of some of his issues.  Just like we’d show these kinds of things to a doctor due to “showtiming” in the office, the hospice evaluator may be able to use it too.

So sorry that getting admitted to hospice wasn’t as easy as it might seem, keep up the good work!   

Malka

Hi,

I would love to read the article, but I don't know how to PM you on this forum.

If you tell me, I will.

Thank you so much,

Mlewis501

My mom was turned downed from Hospice because when asked if she knew where she was, she answered "here with you."  A week later, I called and asked for a different nurse to come out and do the evaluation - she was accepted.  Don't give up!  Call that same agency back and ask for a re-eval or call another hospice!

BassetHoundAnn

Malka wrote:

Hi,

I would love to read the article, but I don't know how to PM you on this forum.

If you tell me, I will.

Thank you so much,

Hi, Malka, 

Click Connections then Invitations. I sent you an Invite which you will need to accept. If you send me your e-mail address I will send you a link. However the link that Phoenix1966 posted to the article should work even if one doesn't have a subscription to WP. 

Malka

Thank you for posting the link to the article. It was very dispiriting. I don't know if I have it in me to do try again so quickly. I am just sitting here shaking my head and wondering why our country is so backward and quickly getting worse. I guess until my father loses enough weight, falls, or gets another ailment that is physical he, and I, will be doing this without the governments assistance. I hope by the time I get to this point we, as a country, will have passed a PAS. I've said it before and I will say it again, we are nicer to our pets than we are to our elderly.

Wild-West

Dear Malka,

I just wanted to circle back to you about this with a story of my own because I hear your discouragement. 

My mom's doctor refused to provide a referral for her to be assessed for hospice. He wrote the most ghastly message in her patient portal, which I manage. He said mom needed to get over her depression and he wanted to talk to my dad. My dad?!! He's been dead for 10 years, and prior to that they were divorced for 30+ years. I am her legal representative on all matters. 

Shortly after his horrific message, mom landed in the hospital once more, but ... BUT, the case manager at the hospital called me. She said she'd been reading the notes in the portal, and wondered if I was still interested in the referral to hospice. When I asked her if mom's doctor would have to approve she said, "No, he doesn't. I can do this for you right now." That day mom was assessed and approved for hospice. I could hear in the manager's voice, and the way she stressed, I can do this for you that she was as offended by his message as was I. 

I wanted to share this story with you (and I hope you return to read it) to let you know that sometimes, not always, but sometimes unexpected angels happen into our lives and open doors we thought were shut. You and your dad will be in my thoughts and prayers.

Wild ...

Olly_Bake

I too believe you should give another hospice company a call. My dad, whom was still very active, was accepted into hospice. He was not bed bound at all. In fact, I use to brag how well he managed. How he got into hospice was as the hospice nurse was coming out to check on mom, whom was very ill, dad would ask the nurse to check him. They would notice shortness of breath, swollen feet and ankles off and on, and high blood pressure readings here and there. Then I let them know all the bad as in all the medical conditions and symptoms I knew he had although his primary or specialist didn’t say he had six months or less. But once he was on the program the nurse told me never to brag on how well he still manage to do for himself. He got accepted based on his severe emphysema. Mom who was said to be on her way out had a turn around and made it for three years on hospice along with my daughter and I driving down to be caregivers.

After much family drama, daughter and I left the daily. Then family wanted both parents off hospice. Reluctantly, I took them off and we lost mom six months later. Then sister took dad and had him put on haldol. I begged doctor to take him off due to stumbling and horrible shakes. Needless to say a severe fall while on that haldol in late 2020 was the start of dad's dementia. Before the fall he was still sharp for an 86 year old.

Getting off topic here. But this time around I tried another hospice. The first hospice company was all around great expect for the social worker who was kind of opinionated. The second one, I love but the head person is kind of head strong and pushy. The first hospice didn't need a doctor referral (I requested) but the second one wanted a doctor referral.

Now that dad is developing more issues, I have to get better clarification on what hospice will and will not treat. When you can and can't go to the emergency room. That's the hang up I'm having now but that's for another post.