Hospice or No Hospice

[wyALSpt]

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
Wy

[saska]

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,
Sharon

[CindyM]

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

[vmd]

Yes, terrible situation. It does not seem proper for hospice to take that attitude. I will keep you in my prayers.

[liz]

Wy -

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

Liz

[Al]

Their profile says Grand Rapids Michigan.
AL.

[Lorie]

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.


Lorie

[Vicki S]

Hi Lorie, Where are you in Mobile? I'm in Daphne and I have ALS.

[Mary Helen Barr]

We were told with my father that unless the patient is "actively improving" he is still eligible for hospice.

[Lorie]

Vicki,
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!


Lorie:-D

[BJR22]

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

[CindyM]

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.

[MtPockets]

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

[CindyM]

Pleae keep us informed, MT. I am glad you are going to get all the help you and your family deserve! Cindy

[ilgal]

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. See p.16 of the pdf at this link: http://www.promotingexcellence.org/i4a/pages/Index.cfm?pageID=3354. 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.

[coolr]

WY--I was told by a Hospice representative to document my condition in order to continue to qualify for Hospice/Medicare. I am resurrecting some of this from computer notes made for an upcoming doctor visit.Some is coming from copies of excerpts of letters written to others--ability to do what, when, etc Also, there is a Functional Disability Scale on which your state of decline--or not--can be recorded. Hope to augment w/repts. from doctors.

[MtPockets]

I was on Hospice for almost 3 months. I found out to qualify my GP Doctor had to certify that I had less than 6 months to live. Guess he must have been wrong. I'm still here.
Thank God,

[CindyM]

Hey AL- My Mom is on her 4th six-month certification for Hospice services. She is declining from AZ, although very slowly, poor thing. :(

[KellyandKay]

Hospice benefits PALS in many ways. For example, my wife was on hospice for 17 months, and never had to go to a doctor's office. This was a great benefit since she was not physically able to travel. Half of her hospice time was on private insurance, and the reminder was on Medicare. The hospice nurse would examine her and consult with their directing physician. They were always able to diagnose her problems and the doctor would prescribe medication and treatment. Sometimes this consultation happened in the wee hours of the morning. This was especially beneficial for her frequent UTIs. Other benefits of hospice are too many to list in this post. Medicare treats hospice for ALS differently than for other condidions, because of the uncertainty of survival time. That is unfortunate but true. To qualify initially, Medicare imposes conditions on top of the doctor's certification of less than 6 months to live. These include nutrition and breathing abilities, and are complicated. Once you are on hospice, it is easier to remain there. Medicare pays the hospice provider a fixed amount of money each month for the patient. The amount depends on the level of services provided that month. Last year, Medicare imposed a maximum total amount of money that they would pay to the hospice provider for any patient. That amount was calculated to cover 6 months of typical service. If the patient is in hospice for an extended time, the hospice may reach that reimbursement limit and have to absorb the entire cost for further services. This may make the hospice provider reluctant to accept a PALS, or may make them try to limit services. Hospices are for-profit businesses, and their policies will vary. We had a wonderful hospice staff. My wife always had a smile for them, and they loved and pampered her.

[joelc]

I am glad some of you have had a good experience with Hospice. In our part of the country you have to be on your death bed and then they come in and make you comfortable while you die. I am not finished living yet so they are not welcome in my home nor will they come.

[MtPockets]

Thanks for the information. I did not know they payed a fixed amount per month. That explains a lot of my experience with Hospice.

In my case they came in two times a week and checked my blood pressure, listened to my lungs, and took my temp. They also helped give me a bath twice a week. For this they were paid $4500 a month.

They did not give my wife any respite care, no one would sit with me while she ran errands. No one helped with house work, even though my wife had a tumor on her spine, a torn tendon in her elbow from lifting me, etc. It was not a good experience for me.

Thankfully, I have been blessed with slow progression ALS and still have some arm movement to help with my transfers and a good Voyager lift system over my bed.

The hardest part now is trying to get into the car to go to the Doctor since I have a wheelchair lift on the back of my vehicle to transport it to and from and have to get out of it and into the car anytime I go anywhere.

Please I am not complaining, just trying to give you a better idea of where I am at with this. I am thankful I have what I have to work with when so many have nothing. I am glad Hospice has and is helping so many people. I know there will come a time when I have to go back on it, but for now I am trying to hold out as long as possible.

[KellyandKay]

Our hospice had a meeting once a month to schedule the level of care my wife needed. At the start, they sent out two aides three times a week for personal care, including bathing, and a nurse once a week. That was sufficient for a long time. Eventually, the aides were coming out every day and the nurses 3 times a week. The hospice even bought an alternating pressure mattress and provided it for our use. Later in the illness, they furnished a housekeeper for several hours three days a week. She did light housework and kept an eye on my wife. I could go out while she was here, which was a help. I raced through the grocery store and ran errands usually. I know many have had bad experiences with hospice, so we were very fortunate. Have you considered home health care instead of hospice? With home health care, you should be charged by the visit, not by the month. Insurance coverage varies, and most have (paltry) annual limits on the number of home health care visits. My heart goes out to you, Mt, and to all PALS.