Hospice is discharging my husband with advanced dementia. Should I appeal the decision?

My mom with advanced dementia also graduated from hospice as they didn’t see a steady decline. I didn’t appeal since she had been on hospice for 2 years. About a year later, she had declined so I asked her physician if she could be considered for palliative care. They did an evaluation and determined that she should be on hospice not palliative care. Her previous hospice doctor re-evaluated her and was surprised to see how much she had declined in a year. If your husband is unable to swallow at times, that’s a huge concern. My mom’s inability to remember how to swallow clearly indicated she was declining.

People with dementia without any other serious health problem, can live for many years. Progression of dementia is unpredictable. Every case is different. Dementia alone is not always considered the end of life, because the majority of people with dementia die from other medical conditions (cancer, heart disease, diabetes, kidney failure, etc.). So, the other medical problems are the ones that determine in most cases, if the patient is in the last leg of his life or not. Dementia alone is rarely the cause of death. In these cases, being unable to move any more, sleeping excessively, being unable to communicate or to eat, are red flags that announce that the end of life is near.

Hospice must determine that a patient has 6 months or less to live. The patient is reevaluated every six months to determine they are still at that same status in order to requalify for hospice services. Since your husband is now determined to be 'stable' with medication, he's no longer thought to be dying within 6 months and no longer qualified for hospice services. That's unfortunate for you, I know, but it's how hospice works and the only way Medicare will continue to pay the exorbitant fees they charge.

Although elders with advanced dementia do not get better, they also do not necessarily pass away within a 6 month period, again, which is what qualifies them for hospice services. So that's what your hospice company has likely determined in your DHs case. Does he have any other serious medical conditions going on besides dementia, such as a heart condition, that may add to his 'qualifying reasons' for hospice services?

Why not appeal this decision? What have you got to lose? Like my husband always says, the answer is NO if you don't ask.

I had a hard time getting hospice to approve my mother for their services, even though she was 1 month shy of 95 with advanced dementia, CHF and AFIB herself. They finally approved her, with reservations I might add, in December of 2021. She was doing pretty well for the first 2 months, normal vital signs, eating well, albeit agitated and slumping over in her wheelchair more and more on a daily basis. Then one day, out of the blue, she went to bed; her heart was giving out. She never came out of bed; she became semi comatose immediately and passed away on the 8th day after taking to her bed. That was 2 months and 1 day after she was accepted into the hospice program. The hospice nurse was literally shocked at her rapid decline and subsequent passing; she said she'd never expected it!

My point is, you just never know when an elder is going to begin the downslide toward their end of life journey. If you feel your DH is at this point in his life, then definitely appeal the hospice decision.

Wishing you the best of luck.

I have a relative who was put on hospice with stage IV kidney disease and given six weeks or so to live. That was a year ago, and he obviously still has stage IV kidney disease, but they, too, booted him off hospice.

If dementia is his only real issue, I'm not too surprised they took him off hospice. Dementia's not what I'd call life-threatening in the short-term, which is what hospice is about.

My mother died of advanced vascular or mixed dementia in March 2021.

I initially wanted hospice after she fell and be came bedridden and incontinent, and given the diagnosis of dementia in April 2020.

The palliative care nurse at the hospital refused, and mom was sent to a snf for 'rehab". Even one of the doctors at the hospital said that he couldn't imagine what rehab could do for her.

She was given physical therapy at the snf which I protested about, feeling that rehab in a 94 year old woman, who was demented, bedridden and incontinent was useless.

The snf refused to let her out and used up all 100 of her rehab days for that Medicare benefi period.

I had constant fights over the with the social worker, and the snf administrator.....I could not get inside because of COVID restrictions.

It was absolutely awful. The NH made a large profit from the Medicare filled bed for rehab.

From there she was in assisted living with an enhanced license, and I pulled her after 2 months.

To make a long tragic story short, I had her evaluated for home hospice, by a physician that made house calls. She was a 6e on the FAST scale, and approved by hospice.

Her weight had declined drastitically, and she was severely malnourished.....they look at albumin levels and evaluate for signs close to marasmus.

It was a long story when I could not keep changing diapers fast enough, as the primary caregiver......I called 911 and she found to have c difficile.

The social workers and attending at the hospital we're miserable to deal with......and they sent her to the yet another snf after a short course of antibiotics.

I got her released from the snf, and got her home where she qualifed for hospice.

This is a brutal money making business by snfs.......they will milk Medicare for every cent....100 days....doing useless therapy.

Mom never could walk again, and remained incontinent . They insisted on keeping her until ready for a for a one personer trasnfer from bed to wheelchair , from a 2 person transfer.

Long story short.....I brought mom home and she was approved for hospice yet again......she was emaciated, couldn't do any adls and was bedridden and incontinent.....this was October 2020.

I watched her decline before my eyes, until she couldn't even roll over in bed, swallow or open her mouth.

I would appeal for hospice as dementia is a terminal diagnosis, and I watched a progressive decline, delusions, hallucinations, etc......until her death in march 2021.

I would appeal for hospice.....dementia is a brutal progressive illness.

Worriedspouse...
I'm so sorry your going through this.
My Mother was on Hospice for 3 and a half years and about a year before she died,I was just informed one day that Mother was going to be discharged.
I was so upset.My Mother was so ill,so
I called The Quality Improvement Organization and appealed the decision and the next morning I received a phone call that Mother had won the appeal.
It can't hurt to try.
Take care~

Talk with your doctor[s] on a regular basis. If your husband starts to show signs of getting worse, reapply to Hospice -They will usually keep someone who does seem to be getting worse. Keep track of specific problems that need to be addressed -Does your husband have other issues besides the dementia? that is probably something your doctors can help with. Take your husband to a neurologist if you haven't already done so who can help address the dementia issues.

My Husband was on Hospice for almost 3 years.
As long as there is a "documented decline" the person can be recertified and remain on Hospice.
This is not a "rule" that the Hospice makes up this is from Medicare and it is their criteria
You can appeal.
If you have documented decline that was not noted by the Nurse, CNA, Social Worker or other members of the staff, and this includes documentation that Volunteers complete then you should have no problem with the appeal.
You can also contact another Hospice and see if they will accept him, You may have to wait a bit of time. And if you wait the original Hospice may take him again.

Find out what the hospice diagnosis was. Depending on the diagnosis loosing weight will keep them on hospice.

My Dad was also a hospice graduate, after a year and a half. But it happened at the height of the Covid pandemic. At first, I thought it was because of how care was changing and the shortage of nurses during that time, which also gave me some fear, knowing he would have to go to the hospital for any issues and I wouldn't be able to visit. So I was a little skeptical at first.

But looking back, I do understand and I wasn't surprised about the decision since he stayed in stable health for the eighteen months, and I attribute a lot of that to the care he was getting. I also did not feel that he was ready and planned on getting better, as I felt as well. He had multiple slow progressive comorbidities which eventually caught up with him, until his skin started failing. At that point, he was taken to the hospital, and was sent home in hospice care, and it was definitely different that time. He only made it another week.

As others have said in here, it wouldn't hurt to appeal. But if he has been maintaining a steady stability state of health for so long, they may decide palliative is best for now, until things show a definite decline.

No matter what, my thoughts and prayers are with you and your family during this time, and hope you will gain some additional GOOD memories with him during this time, to be able to hold onto. The three years we dealt with my dad's situation were difficult for everyone involved, but now there is just another empty part in my heart without him, especially with tomorrow being Father's Day.