Denied Hospice

ESkayP

For quite a while now, my mother has been declining cognitively. It isn't a steep decline but steady enough that I often notice things she used to do for herself that she no longer does. Also, Mom had two "spells" in the last four months where she spaced out, went cold and clammy with a low BP and low heart rate. Both times she was sent to the ER and both times, multiple tests revealed no immediate cause. I asked if it could be the consequences of her diminishing brain function, and it was agreed that it's possible her body is responding to brain atrophy. At the follow up appointment, her PCP suggested it was time for hospice care. She recommended a provider. The RN assigned to Mom's case met us at the facility. I filled out all the paperwork. Then, the very next day, a representative called me and said the PCP had rescinded the recommendation unless another doctor provided a second opinion. They said that Mom didn't meet Medicare requirements for hospice such as a lack of mobility, recent weight loss, and estimated six months of life remaining. Mom's provider is a PA, so the doctor in the office that she reports to must have overruled her decision. I'm flummoxed. The care Mom would have gotten from hospice would have been greatly appreciated. She needs extra care that the MC facility doesn't seem able to provide. Is there a middle ground? Is there a level of care before hospice? I don't want to wish my mother were in worse shape just to get the care she needs. I thought the six-month rule didn't apply to dementia patients. I can't argue that Mom's body is relatively healthy. I don't know if she has six months or six years. She still can't take care of herself, though.

psg712

My mom has had two recent hospital admissions for what seems to be just dehydration. Of course she doesn't take in enough fluid, in spite of frequent prompting by family and MC staff. She doesn't feel thirsty and doesn't understand the need for hydration.

I would definitely consider hospice for her. My only reluctance comes from the fact that she appears to be benefiting from PT and OT at her facility. She could not receive those therapies concurrently with hospice services.

The hospital provider had an intermediate suggestion. She made a referral to palliative care. That service can help the MC staff differentiate between a truly urgent situation that warrants ER attention and one that is just the result of dementia progression. She hasn't been discharged yet from hospital so we'll see how this works to prevent readmission. Maybe that is an option for your family?

cdgbdr

Palliative care is an option. Many hospice also offer this.

ESkayP

https://alzconnected.org/discussion/comment/246659#Comment_246659

That's helpful. Thank you.

SDianeL

https://www.alz.org/getmedia/4d551ed8-8a02-4280-be33-15edd54782a7/alzheimers-dementia-medicare-hospice-benefit-ts.pdf for Medicare to approve hospice the doctor must certify that the dementia patient has 6 months or less to live. Of course that’s subjective. My DH had blood pressure spikes with no known cause that were probably caused by his Alzheimer’s. Posterior Cortical Atrophy can cause that. Is your Mom seeing a Neurologist? Might be a good idea to get a second opinion.

ESkayP

https://alzconnected.org/discussion/comment/246705#Comment_246705

She actually has two neurologists, one for ALZ and one for myasthenia gravis. The MG is in remission, but I have wondered if there is a connection. I called both offices inquiring about Mom's medications, but neither seemed to think their prescriptions were causing the BP drops. I wanted to narrow Mom's medical care team to just one head doctor and then a staff of nurses and caretakers as boots on the ground, so to speak. That's what hospice would have been for Mom. At least that's how they described it. As things stand, I am still the only contact who juggles communication among the neurologists, the primary care doctor, and the MC staff. When something happens to Mom or her behavior changes, the MC staff calls me and asks what I want them to do. I don't know the answers anymore.