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Mom has lived in my home for 9 years now. For over 6 years she has been falling deeper into dementia. About just short of 2 years ago, her doctors and Hospice agreed they should put her into the Hospice program. After that time mom has been in and out of hospitals at least 20 maybe more times in which she stayed for 4 or more days for stroke, seizures, dehydration, uti's and all dementia related issues as she is unable to relate to what is hurting her at the time.

I have just this week been told that she is being released from Hospice care. They agree she does need their care from Hospice since she didn't decline quickly enough. I have an appointment in 2 days, that Hospice knows about, with a orthopedic surgeon to find out with the cellulitice and the way her toe isn't healing about when it will need to be amputated. Mom has been diabetic for over 40 years.( I am being told this is a pro active thing to do for mom by hospice and Medicare doesn't look at being in Hospice as a place to be pro active.) If this infection were to go into the bone in the foot, she would need to be put in a Nursing Home. I could not care for her at home at that point.

While under the care of Hospice, she continued to deteriorate. This change of her care with Hospice is because Medicare is making Hospice discharge the patients that have been under their care for too long.

Does anyone know what constitutes tooooo long? Please help!

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What happening with your mom? We recently had an incident while in Hospice, and one needs to watch for when medical care can help, and revoke hospice care tin order to save their life.
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Gladstone, you should APPEAL the decision to discharge your Mom from hospice care. I needed to do this for my Mom when the provider thought she wasn't declining quickly enough (and the day after they notified me of the pending discharge, Mom developed aspiration pneumonia). Whatever state you live in has guidelines for the appeal process--usually an emergency appeal needs to be filed within 24-36 hours of the delivery of the discharge notification to you. Here in PA, the emergency appeal will be reviewed and a decision will be made by the state quality review board within 72 hours of filing the appeal. If you wait and do not file the appeal within the emergency appeal time frame, you can still file an appeal but it will take a few weeks for review and decision; during this time your Mom will not be cared for by the hospice agency. Don't delay!
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This past summer my mother-in-law was diagnosed with pancreatic cancer. She was 91 and in the last stage of dementia. When she was diagnosed with pancreatic cancer the doctor told us we would not be able to find a doctor that would operate on her because of her age and the dementia. He told us to contact hospice. They were wonderful. They told us we could get respite care for her and my father-in-law even though he was not terminally ill though he does have congestive heart failure. We were making the arrangements for them to pick them up and take them to respite care when my mother-in-law suddenly passed away. She was only in hospice for barely two weeks. It helped a lot for someone to come in and bathe her because she quickly became bedridden. During this time my brother-in-law who was diabetic ended up in the hospital and ended up having organ failure. He was transported to a hospice facility and in less than 24 hours he passed away. My sister is very grateful for everything they did for her and her husband . She has nothing but praise for them. When I flew down to Florida for the funeral she took us to the hospice facility and they let us see a room. My sister has access to a free standing chapel on the hospice grounds and she says she goes there often.
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I want to extend my deepest sympathy to BlueRick for the loss of his mom. I didn't want to 'jump' on you at all; just wanted, for the benefit of anyone else who might read it and think that this would be the case (that Hospice would 'dump' a patient because they were too far gone) has been misinformed. Perhaps, if Hospice was at fault in anyway, the explanation that you received up front was not totally conveyed or you did not totally understand the 'rules'. In a time of grief and worry, that is understandable. And once again, I really would urge those looking for Hospice care to interview more than one. They are all there for basically the same thing, but different ones do have subtle personality differences, as do people, and there could be a better fit with one organization than another.
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Windytown...my journey with my mom ended over a year ago...thanks for your understanding.
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Dear Windytown,
As we are talking about my mother I must admit that I didn't really acept she was dying...even though I should have kniwn better. I thought that as long as she was in the hospice they would keep my mother alive...and they did...until they terminated her care without any explanation or support and I couldn't get any further help anywhere...and I tried. We had nursing care at home but it was futlile. Her last words were to thank me for all I had done. She died 4 days later.
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BlueRick, I think you figured it out wrong. Hospice is very specifically to care for the patient and help the family to the end of life, and then to continue to help the family through grief counselling if they want it. Had you perhaps opted to try some things to prolong your mother's life, through a doctor other than the hospice doctor? Or to take her to ER without consulting them? That would be outside of the scope of hospice's mission. They could not keep her within their program in that case.

To oversimplify greatly, to go on the hospice program the patient has a terminal condition that isn't expected to get better and they are in the final stage of that condition. The patient has already "reached the end of life and nothing more can, or more importantly, should be done to keep them alive." Rather than keeping them alive the mission is to keep them comfortable, pain-free, and out of anxiety as much as humanly possible, and to help their loved ones through the dying process as well. There is certainly NO attempt to hurry the dying process. If the patient perks up and it now makes sense to try some life-prolonging therapies, hospice will discharge the patient so that that can take place. When the patient is later once again at the point of approaching death the patient can be readmitted. I wonder if you fully understood the nature and mission of hospice when your mother entered the program? They are there to keep the patient comfortable through the dying process and they certainly did a fabulous job of it with my husband. As windytown says, they were invaluable.
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Gladstone, I think it would help if you talked to the hospice social worker and asked for a specific reason for the discharge. It sounds, and igloo says, that you may be out of compliance with the hospice guidelines. It was explained to me in the initial intake meeting that I was free at any time to take my husband off hospice, to be pro-active, and then reapply for hospice when we were ready again. It is not that you can't seek additional treatment -- just that it can't be paid for under the auspices of the hospice program.

I think a face-to-face meeting with the social worker should help you understand the situation and also how to get back on hospice when you are through with the other treatments.
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BlueRick, Hospice is end of life care to the end. My dad was on hospice at home, and his final two weeks at the hospice house, for a total of 10 weeks. I can't imagine going through the final days without them.

I'm trying to be gentle here, but did you have expectations they would do anything to keep her alive?

They are there to help with the dying process. A hard nut to swallow, but in our case they were invaluable. I send you big hugs and peace that will only come with time. I'm struggling tonight and it's been two years. Grief has it's own timeline. You've just started your journey. Keep talking. We are here for you.

Perhaps it would be wise to make a formal complaint.
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My dad's Hospice care was almost wonderful. I did have one complaint, however. The caretakers,nurses, etc would talk about my dad as if he were not in the room. They talked about the fact that he was in fact dying and spoke of other issues that should have been discussed outside of my father's room. I did ask them to not do this, and they respected my wishes and refrained from doing so.. I never knew from minute to minute how lucid my father was, and I did not want to take any chances that he perhaps would know what was being said and become frightful as a result of what he heard. There needs to be more sensitivity in regards to this.
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Gladstone - when your mom went onto hospice, did they explain to you what comfort and palliative care involves? and more importantly what is not allowed?
My guess is not that she has been in hospice too long (they routinely evaluate and extend acceptance for patients over and over often for years) but that things have happened that is not within accepted care for hospice.

This may be hard for you to do, but can you speak with one of the care co-ordinators with the hospice group that is discharging your mom from their service to see what they state is the reason for discharge in the Medicare file? This should show what system she was evaluated based on and what her score was. There are 2 main programs for determining if hospice is needed:
1. FAST - Functional Assessment Staging Test &
2. The Mitchell Scale, also called Mortality Risk Index (MRI) Score. Mitchell seems to get used more, especially in NH hospice evaluation.

If her score on these is within hospice guidelines, then it might be that by your taking her to see doctors and get treatments or evaluation for surgery, etc., you are doing things that promote "curing" her rather than medications or therapies needed for "comfort and palliative" care. "Curing" cannot be done under hospice rules. Things you are doing "pro-active" for her, like your upcoming othro surgeon appointment are usually not allowed under hospice rules. Realize that once they go on hospice, the rules are pretty strict on seeing doctors. She pretty well has to be seen by the MD’s affiliated with hospice, with limited care done. If she goes to see her old MDs or you take her to the ER or do anything that promotes "curing" her or prolonging her life, she can be discharged from hospice. If you have been doing alot of these sort of "pro-active" medical visits, hospital or ER trips then her Medicare file has likely been flagged as out of compliance for hospice. CMS keeps a real-time database with all Medicare and Medicaid billing so it is coming up that Medicare is getting billed for services not allowed under hospice. As you said, they told you that basically being pro-active isn't the thing to do. That was supposed to be a roundabout way to tell you to stop doing things that could cure a condition and prolong her life in order for her to get hospice. Comfort only care can be hard for family to go along with but that is what the hospice system is about.
None of this is easy. If you can't go along with the hospice rules, then she needs to be back on the regular Medicare system for health care. By discharging her, that can happen. Good Luck.
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To frustrated2...sorry...I only know what I saw and experienced for myself...and I begged them to keep her...they would NOT.
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Sorry to disagree with BlueRick but he is incorrect. My sister has been a Hospice nurse and admission evaluator for 15 years and the whole purpose of Hospice is to see a person and by extension their family through to the end. By very definition they do not drop terminal patients.
Patients CAN be discharged and readmitted more than once. A neighbor's mother was dismissed and readmitted three times. She actually cared for her mother in her home and was, as part of hospice's services, provided some 'respite' care for her while the daughter attended a family function out of town. Her mother passed away at the Hospice facility, a few hours before my friend arrived back in town.
A person can be eligible for Hospice if they have a broad range of physical or mental conditions that would eventually or could eventually be terminal. A doctor has to recommend that they be admitted to Hospice. If your parent has been deemed to be improving and her death isn't imminent then by releasing her from Hospice she can be treated for conditions rather than just be made comfortable. That could change in a short period of time. Talk to her doctor if you disagree with her not being in Hospice. There are also usually several Hospice organizations in a town and you should interview them all to find the best 'match' for you and your loved one.
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When a patient is discharged from hospice care as my mom was, it usually means the hospice has decided that the patient has reached the end of life and nothing more can, or more importantly, should be done to keep them alive. In my mom's case they left me to figure this out after she passed on.
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Hospice is supposed to be limited to comfort and palliative care.

Any hospitialization, doctor visits or surgery to make them "better" is not allowed within the hospice system. They are supposed to be limited to seeing only the MD's that work within the hospice system if you want to be in the program and have Medicare pay for it. It could be that some of the things you are doing for your mom are not in compliance for hospice care so that is why she is being released.
Sometimes it can be hard for family to come to an understanding that you cannot interfere with the terminal nature of a disease if they are on hospice. And dementia is a terminal disease.

My MIL passed away while in hospice system. She had fallen the year before and broken her hip, had surgery, recovered and moved into NL. Then in the NH she fell again but had been evaluated for hospice as her dementia was later stages so this time NO surgery was done. She just had palliative care - mainly pain meds - and was confined to wheelchair as the break wasn't total. Now she got a nasty infection and because she was on hospice, NO antibiotics and she continued to deteriorate and was moved to a free-standing hospice wing of a hospital. Passed away about 2 weeks later. That is what happens with comfort and palliative care.
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Hospice is usually suppose to be for the last six months of a patients life, however since it is impossible to predict some people are on hospice for years. One of our friends was on hospice, and taken off for the same reason you are expressing, and then passed away two weeks later. It, from my point of view, just depends on when the medicare worker that oversees approving hospice decides it has been going on too long. Hospice is very expensive. I saw some charges that included
$215.00 for a fifteen minute visit from the nurse. This is what I have experienced, other's experiences may be different. Maybe Medicare will only pay for the amputation if she is off hospice, and then they might be able to put her back on.
Medicare in a lot of cases will not pay for hospital and surgery if the patient is on hospice, especially if the patient diagnosis is diabetes and then the surgery has
to deal with this diagnosis. My dad is on hospice also, his diagnosis is cardiac, but medicare will pay for him to go to the doctor for stomach problems, but nothing related to cardiac would be covered unless you pay out of pocket. I think this is
why they might be taking her off because on hospice you don't treat the condition, you only make the patient comfortable. Hope this helps.
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