Hospice versus Dallas ALS specialty

[suematt]

Sister diagnosed with bulbar ALS Dec 2021. Somehow is under hospice care. Has feeding tube. So far excess mucus (has suction machine), some choking and wobbly walking (uses walker). Hospice pays for all meds, food, weekly nurse visit, social worker and minister if required. Only takes riluzole, no other ALS med. Hospice is reluctant to prescribe meds that prolong her life and I'm wondering if some of the meds could at least temporarily help with her symptoms, like nuedexta. She's in Texas. The question is should she really be under hospice care? Would she receive better treatment at ALS Clinic at Texas Neurology?

 

[Nikki J]

Very sorry about your sister. Mostly this depends on her wishes. Some PALS want to go as quickly and painlessly as they can. Why did she go on hospice?

I do note she doesn’t have a power chair apparently? She won’t get one on hospice. Also if she wishes non invasive ventilation hospice might support it if already on it ( might not) but I don’t believe they will start it.
re meds if one has emotional lability I would fight hospice for nuedexta as a comfort measure but you are right they aren’t going to allow it for any possible swallow effect. Nor will they do other meds to slow like relyvrio or radicava

hospice has better home care than she ould get without it. Again it is her choice and her wishes. It is hard if you feel differently

 

[lgelb]

She can go off hospice any time she wants to. She may not have understood all the implications that Nikki mentioned when she signed on. I would just let her know her options and she can make her own informed decision. If she leaves hospice, she can still fund in-home care/support to whatever extent is needed/affordable, with a larger array of options. Does she have a family member or friend that assists with her care?

Best,
Laurie

 

[old dog]

People need to understand that hospice is for people who are near the end of life. A hospice patient can no longer see their regular doctor. If an emergency arises, the hospice nurse and family caregivers are supposed to handle it. Medications that prolong life are not permitted. Only medications to control pain and anxiety are usually prescribed.

Most hospice employees are wonderful caring people, but the time they are allowed to spend with patients is very limited. Families need to be aware that a nurse may only be with the patient for a half hour once a week, or, at the most, twice. Usually the only other help is a once-a-week bath aide. The burden of daily care is borne by family caregivers. Hospice does provide hospital beds and other ordinary equipment. Hospice care has become big business.

 

[Jensen73]

Palliative care and ALS clinic

 

[lgelb]

Jensen, are you asking a question or making a comment?

 

[Mary2]

We were doing palliative care with a NP who makes home visits and then Telehealth with the Emory ALS Clinics.
When we asked for Relyviro we were referred by Emory to Synapticure. This is a company established by Brian Wallach that has neurologists who do Telehealth. I suppose Emory may not have had the resources to place all of their patients on Relyviro at once. Synapticure seems fine. We had a telehealth visit with a neurologist who apparently is GA licensed but living over in South Carolina. There is a RN nursing care co-ordinator who can be emailed or phoned. I believe Synapticure will take the place of the ALS clinic now. He did spend an hour with us and sent us his MD note after. So far Synapticure seems fine.

 

[Tomswife]

Mary. I am glad Synapticure is meeting your needs at this time.
I am thinking of your and you are in my prayers. This must be impossibly difficult.

I read an interesting article about Synapticure in the NYT. Title is "A Race to Rethink Care After a Dire Diagnosis " if anyone is interested.