I am so frustrated. Hospice says they will drop my MIL on Tues because her decline is not rapid enough. So the hospice bed, catheter, hoyer lift, catheter, etc all goes back.
Then I will go somewhere else to rent it all.
Then I may re-apply someday.
Problem is..........she IS declining. But not quickly enough.
Just frustrated. I hate being assessed by the government.
She is getting great care from me. And that has worked against me.
Venting.................
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Im not criticizing. You grandpa is to be commended for his dedication as a caregiver but your story does raise the question.
Thank you Maria, Maggie and Veronica. This is the way it should be done on this forum.
I believe that the rules for hospice when dementia is the "only" morbidity factor have tightened.
My mother has dementia and went on hospice care after she broke a hip. She was expected to die within weeks. After three months of progressive improvement, she was discharged from hospice care. My sisters and I agreed that she was no longer on the short path to death and did not need the extra attention from hospice. BUT we were concerned about the equipment hospice had provided. In many cases Medicare can provide the same or similar equipment, and Medicaid will cover supplies. Some of the things hospice was providing were no longer needed.
I am sorry that you are losing the extra attention and care, but you don't have to lose all the equipment. It is just a bit more hassle to get it provided. Hospice is awesome at cutting red tape. Now you are back to dealing with red tape. It can be done, but I am sorry you must deal with it. Perhaps the hospice social worker can advise you on shortcuts to get what you need.
Because she performed well during the evaluation is largely due to the excellent care you are providing but I think if you stress the inability to obtain nutrition it may and I say may alter their perspective. We were told when my MIL took to her bed to expect her to die within six months because that is usually the pattern with dementia. My specialty is end of life care and although some patients do become disturbed and apparently demented at the end of life this is not the norm for hospice patients. if you want the service to continue you need to make a strong case to have them stay. I do understand their nervousness about keeping a patient with dementia enrolled for over 7 months. It is a very fine line.
I agree that she is in far worse condition than many hospice patients but although you see a decline she may not have progressed much from her admission. As someone else said patients with ALZ may live for many months or years in this kind of state and the hospice benefit was designed to only last about six months.
hospice generally discourages the treatment of such things as UTIs and pneumonia which generally shorten a life and will only pay for something like radiotherapy when if may relieve symptoms by for example shrinking a tumor and thus reducing pain.Ttreatments are never authorized if they are of a curative nature.
The patient's own Dr continues to be responsible for the patient's care and the patient can still visit if able. It is extremely rare for PCP to visit a patient in their home, instead they rely on a report from the primary nurse which he/she submits every 2 weeks and which they regretfully rarely read. The nurse may think a patient has had something like a seizure,call the Dr and he will order medication or if the Dr is not available the Hospice medical director may prescribe. As far as feeding or not feeding a patient it is never advised as long as the patient is able to take the nutrition but when a patient of their own accord refuses food it is not forced and attempts are discouraged and no artificial feeding is started.
You and MIL are on the borderline and I have no idea which way the decision will go. Rack your brains to try and identify any thing that has visibly worsened since MIL was admitted to hospice. Could she walk , roll over, feed herself, request things, read, watch TV, stand up, be showered, was she incontinent of both bowel and urine, has she begun to choke on liquids or food, have you started thickening fluids and pulverizing foods? I can't think of anything else but you know what she could do and can't now. They really want to keep her so help them all you can.
Yes, the feeding thing makes me wonder. She just opens her mouth wide and I have to put the food in. All the saliva makes me queasy ....
I hate even typing that. But I'm pragmatic about our final journey. Please don't take offense.
werner-saumweber./alzheime/7stages.htm
I Googled, and it seems that hospice does cover Alzheimer's. Perhaps it's a question of stage: http://www.alz.org/stl/documents/hospice_info.pdf
There's something very wrong about pulling her hospice care when she can't feed herself. If you elected to stop feeding her, she wouldn't survive. There's something wrong there...
I wish you very good luck at the hearing. Maybe it's one of those things that, if you jump through the appropriate hoops, they will allow it to continue. I hope so.
Maybe there's something here that will help you at the hearing:
Quote: Hospice still quotes the Six Month Rule but they use the new guidelines to qualify a Loved One to be covered by Medicare. Many hospices would not have the financial resources to care for those in end stage Alzheimer’s Disease without Medicare coverage. The general guidelines are that the Loved One be in Stage 7 of the disease (according to Reisenberg’s seven stage scale) and have some form of complication, such as:
Unable to ambulate without assistance;
Unable to dress without assistance;
Unable to bathe properly;
Urinary and fecal incontinence; and
Unable to speak or communicate meaningfully.
The complications that may be present at the time of qualification may be:
Aspiration pneumonia;
Signs of a recent stroke;
Upper urinary tract infections;
Bed Sores or Decubitus ulcers (multiple, stage 3-4);
Recurrent fever after antibiotics; and/or
Difficulty in swallowing/refusing food.
ec-online/knowledge/articles/hospiceknox.html
It's the hospice doctor who must prove to medicare that my MIL is worse than she was 60 days ago. She is 89 years old with late stage alzheimers and cannot feed herself. She is completely bedbound and incontinent (bowel and urine).
She has no bedsores at all and no other serious conditions other than the alzheimers. She is able to talk on occasion but mostly nonsense.
Medicare is apparently cracking down on alzheimers in particular because patients can live for a long time. So she needs another problem - like a bedsore or something. Anyway, for the assessment..........she ended up looking and acting the best ever. Not a good thing. So there is a hearing about our case on Tuesday. Doesn't look good.
Yuk. That's just how I feel.
I just Googled and found this:
"Paying for Hospice Care
Who is eligible for the Medicare
Hospice Benefit?
Will I lose my Medicare if I elect the
Hospice Benefit?
Do I have to change doctors to receive care?
Am I locked into hospice care once I elect
the benefit?
Is there a limit to how long I can receive hospice care?
What costs
are covered?
What if I move to a different setting
for care?
What if I am in a nursing home or assisted living facility?
How can I learn more about this benefit?
Social worker with patient family memberPaying for Hospice Care
Hospice care is available to anyone, regardless of insurance or financial resources. No one who needs our services is turned away because they cannot afford to pay for care.
Generous community support helps Hospice & Community Care, founded as Hospice of Lancaster County, the community's only not-for-profit hospice organization, provide quality care to all in need of hospice and bereavement services.
For most hospice patients, the cost of hospice care is fully covered by the Medicare Hospice Benefit (under Medicare Part A, or hospital insurance). The Medicare Hospice Benefit provides a daily allowance to the hospice organization. In turn, the hospice organization pays for all medical services, medications, durable medical equipment, supplies and treatments related to managing your serious illness and approved as part of your individual plan of care. The hospice plan of care focuses on comfort, rather than curative, measures.
Like Medicare, Medicaid and most private insurance companies also provide coverage for hospice care and services. Private insurance benefits, deductibles and co-insurance requirements may vary by plan and are therefore reviewed and communicated on an individual basis.
For those not eligible for coverage through Medicare, Medicaid or private insurance, or for those who desire services for symptom control while pursuing curative treatment, Hospice & Community Care offers our Fee Reduction Program. Supported by community donations, the Fee Reduction Program works to ensure that everyone in the community has access to quality care and comfort when coping with serious illness and loss.
The Fee Reduction Program determines a maximum out of pocket expense you may incur for hospice care and services based on your annual income. When your maximum out of pocket expense is met, your care will continue and is covered by community support.
Common Questions about the Medicare Hospice Benefit:
Who is eligible for the Medicare Hospice Benefit?
Medicare beneficiaries must meet the following criteria to qualify:
You must have Medicare Part A.
You must enroll in a Medicare-approved hospice program such as Hospice & Community Care.
Your doctor and the hospice medical director must certify that you have a life-limiting illness with a probable prognosis of six months or less if the disease runs its normal course.
You must sign a form indicating that you are electing your Medicare Hospice Benefit to cover the costs of services related to managing your life-limiting illness.
Will I lose my Medicare coverage if I elect the Medicare Hospice Benefit?
Standard Medicare coverage for services unrelated to your life-limiting illness does not change and is not affected by electing the Medicare Hospice Benefit. Services related to your life-limiting illness and included in the hospice plan of care are covered by the Medicare Hospice Benefit in the form of a daily allowance issued to the hospice organization who then pays for the cost of these services.
Do I have to change doctors to receive care from Hospice & Community Care?
No. The Hospice & Community Care team works with your physician to provide Hospice care for you and your family.
Am I locked into using hospice care once I elect the Benefit?
No, you are not. You may revoke the Medicare Hospice Benefit at any time without penalty. There is no loss of coverage or service days. You may also re-elect the Medicare Hospice Benefit at any time, provided you meet the qualifying criteria.
Is there a limit to how long I can receive hospice care if utilizing the Medicare Hospice Benefit?
Since no one can predict the course of a serious illness, there is no limit on the number of days a patient can receive hospice care. The Medicare Hospice Benefit consists of two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. Each benefit period requires medical certification of the life-limiting illness at the beginning of the period. The Medicare Hospice Benefit covers the cost of hospice care and service for every medically certified benefit period regardless of the patient's length of stay in the hospice program."
Notice it says an UNLIMITED number of 60-day periods. Your doctor isn't re-upping him. Talk to your doctor.