Hospice or No Hospice

[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.