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New member
Apr 22, 2007
My dilemma is to keep hospice or to go without care. I have had hospice for over a year now and have recently been dropped by them due to slow progression. I don't understand, why can't we just have regular home health care without being the hospice? I'm angry! I feel that my local hospice has let me down. The only function limb I have left is my right hand. I deserve better than this! All of us do! So what do I do now? Do I fight for hospice care or do I fight for home care? Thanks for listening
Hello Wy,

That is a horrible dilemma, and I am so sorry you are going through this. You certainly do deserve better! Do you live in the U.S.? In the U.S., the requirement for hospice eligibility is that a person must have a prognosis of 6 months or less. That absolutely does not mean that once someone has been under hospice care for 6 months, he/she is released; I have known of people who have lived under hospice care for years with that same prognosis. I am not sure who makes the prognosis determination, presumably the primary care physician.

As for whether you should fight it, that is such a personal decision. Have you already taken this to the ultimate decisionmaker at your local hospice? Do you have someone who can fight this with you on your behalf, like a patient advocate?

What you described sounds so very contrary to the hospice mission of death with dignity. That is so unfair....

Best of luck,
Hello Wy. I agree with Shannon. Are you being seen by an ALS clinic? I'd get the social worker there or maybe someone at The MD society on your side. You shouldn't have to fight this yourself and there must be a way to extend your services for another term. At the very least there should be an appeals process, and many times the process is a almost a formality the require you to go through before reinstating the service. At least it works that way in other bureaucracies.

You fight for what you need, honey! You deserve it! Cindy
Yes, terrible situation. It does not seem proper for hospice to take that attitude. I will keep you in my prayers.
Wy -

Where are you? I have read that "Hospice" means different things in different countries.

Their profile says Grand Rapids Michigan.

My Brother Timothy's Doctor put him on part time hospice week before last. She said you can get it if you have a disease in which you are not going to get any better. He is also on Medicare and Medicaid (alabama) though. I would dig a little deeper. I have had to dig deeper on too many things that we were told, and found out different.

Don't always accept no. Keep pressing.

Hi Lorie, Where are you in Mobile? I'm in Daphne and I have ALS.
We were told with my father that unless the patient is "actively improving" he is still eligible for hospice.

I am in West Mobile. Did you see the post I put up for you to see about the ALSA. Helping in our area?

When you can Private Message, I will give you my E-Mail!

Hospice requirements?

I'm in Texas, and recently found out that the diagnosis of ALS- because it is a terminal illness, for which there is no cure- is an automatic qualification. From diagnosis, you qualify.....some people wait to acquire all neccessary big equip., like lifts and wheel chair, etc...because once on hospice, insurance wont provide these items. In Texas, Medicare pays for hospice 100%- they order, pick up and deliver all ALS related meds ( prescribed, or over the counter), and replace all med equip as needed. We turned to hospice because it made more sense for us financially, we have a special "team" of RN, RT, OT, Chaplain, Social Worker, Dr., etc...- and we needed some help with bathing, use of suction, and routine maintenance issues. They all come to us- travel is not easy for PALS, and I know several PALS who have been on hospice for over 6 months. Best of Luck
Thank you for this information. It seems like Hospice is an under-used resource on these boards. Maybe folks believe that the agency only comes in at the very end, or maybe people believe it is a sign they are giving up if ask for hospice services. Whatever the reason, I always feel badly when I hear of a CAL struggling alone without the resources of this great agency.
My GP Doctor just recommended hospice for me this past week. I spoke with them and they said they will send someone out to evaluate me to see just what I qualify for under the Mississippi program?

This is all new to me.

God Bless
Capt. AL
Pleae keep us informed, MT. I am glad you are going to get all the help you and your family deserve! Cindy
I hate to contradict BJR22 but I have worked with hospice and home health care for over 10 years and although ALS is a terminal illness, patients do not automatically qualify when diagnosed. They must have a less than 6 months prognosis or meet other qualifying criteria---FVC<30% or FVC<60% plus 2 other respiratory or nutritional indicators.

They may be on hospice longer than 6 mos. These rules regarding hospice do not vary from state-to-state if the hospice is Medicare-certified because Medicare is a federal program. However some hospices interpret the regulations a little differently.

The above link also has some comforting information about how death occurs for most PALS.

PALS do automatically qualify for Social Security Disability benefits due to special status given ALS.
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