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Dave K

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Myth No. 1: Hospice care is only intermittent.

The truth: There are multiple instances of PALS who have needed and received 8, 16, or even 20 hours per day of in-home nursing shift care. Unless a patient’s insurance plan clearly and specifically limits it, there is no limit to the amount of hospice care to which a patient is entitled, if it is medically necessary to palliate symptoms arising from the terminal illness.

Myth No. 2: The job of a Home Health Aide is to help the patient bathe, make the bed, and leave after one or two hours.

The truth: Home Health Aide functions include the following tasks that should be detailed in the patient’s care plan:

• Assistance with mobility, range of motion, transfers, positioning, exercise as ordered and taught by an RN, physical therapist, or other appropriate health personnel
• Maintenance of a clean and healthful environment
• The performance of simple procedures as an extension of therapy services.
• Household services essential to healthcare at home.
• Assistance with medications that are ordinarily self-administered.
• Laundry.
• Light housekeeping.
• Collect specimens; urine, stool, and sputum
• Shaving
• Oral hygiene
• Toileting
• Nail care (except that which requires a podiatrist)
• Care of glasses, personal equipment and belongings
• Apply non-legend topical ointments, creams, lotions, and solutions to intact skin surfaces
• Take vital signs: temperature, pulse, respirations, and blood pressure
• Measure and record in-take and out-put
• Chart the medical record

"Light housekeeping" is commonly understood to mean sweeping and/or mopping up, taking out the trash, and laundering the patient’s soiled clothes and bed linens.

“Performance of simple procedures as an extension of therapy services” includes such tasks as

• Cleaning and storing reusable equipment and supplies,
• Maintaining the contents of medical supply cabinets, and
• Assembling necessary equipment and supplies for tube feedings, medication, and therapies.

Again, unless a patient’s insurance plan clearly and specifically limits it, there is no limit to the amount of hospice care to which a patient is entitled, if it is medically necessary to palliate symptoms arising from the terminal illness. If aide services are not being adequately provided, PALS and CALS should request that additional aide services be included in the care plan, and the nurse who writes the care plan should include the services in the written care plan.

Myth No. 3: Patients are not eligible for hospice unless their life expectancy is six months or less.

The truth: Many PALS are entitled to hospice benefits when they have a life expectancy of 12 months or less. All PALS should carefully research their individual eligibility requirements.

Myth No. 4: A tracheostomy and/or mechanical ventilation disqualifies an ALS patient from hospice eligibility.

The truth: Hospice does not cover measures intended to extend someone’s life artificially. Hospice care is palliative in nature. Therefore, if a tracheostomy or mechanical ventilation are done to extend life artificially, it is not consistent with hospice care; however, if these measures are performed as comfort measures, they are included in hospice care. For example, if the tracheostomy is done to help manage secretions, and if the mechanical ventilation is used part-time to help the patient sleep, prevent headaches, and reduce fatigue, then the measures are palliative in nature and appropriate for hospice care.
 

affected

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Thanks Dave, hospice care in the US just couldn't be more different than palliative care services provided in Australia. I hope this helps others in the US unravel what seems to become terribly complicated.
 

BlueandGold

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Myth No. 1: Hospice care is only intermittent.

The truth: There are multiple instances of PALS who have needed and received 8, 16, or even 20 hours per day of in-home nursing shift care. Unless a patient’s insurance plan clearly and specifically limits it, there is no limit to the amount of hospice care to which a patient is entitled, if it is medically necessary to palliate symptoms arising from the terminal illness.

Myth No. 2: The job of a Home Health Aide is to help the patient bathe, make the bed, and leave after one or two hours.

The truth: Home Health Aide functions include the following tasks that should be detailed in the patient’s care plan:

• Assistance with mobility, range of motion, transfers, positioning, exercise as ordered and taught by an RN, physical therapist, or other appropriate health personnel
• Maintenance of a clean and healthful environment
• The performance of simple procedures as an extension of therapy services.
• Household services essential to healthcare at home.
• Assistance with medications that are ordinarily self-administered.
• Laundry.
• Light housekeeping.
• Collect specimens; urine, stool, and sputum
• Shaving
• Oral hygiene
• Toileting
• Nail care (except that which requires a podiatrist)
• Care of glasses, personal equipment and belongings
• Apply non-legend topical ointments, creams, lotions, and solutions to intact skin surfaces
• Take vital signs: temperature, pulse, respirations, and blood pressure
• Measure and record in-take and out-put
• Chart the medical record

"Light housekeeping" is commonly understood to mean sweeping and/or mopping up, taking out the trash, and laundering the patient’s soiled clothes and bed linens.

“Performance of simple procedures as an extension of therapy services” includes such tasks as

• Cleaning and storing reusable equipment and supplies,
• Maintaining the contents of medical supply cabinets, and
• Assembling necessary equipment and supplies for tube feedings, medication, and therapies.

Again, unless a patient’s insurance plan clearly and specifically limits it, there is no limit to the amount of hospice care to which a patient is entitled, if it is medically necessary to palliate symptoms arising from the terminal illness. If aide services are not being adequately provided, PALS and CALS should request that additional aide services be included in the care plan, and the nurse who writes the care plan should include the services in the written care plan.

Myth No. 3: Patients are not eligible for hospice unless their life expectancy is six months or less.

The truth: Many PALS are entitled to hospice benefits when they have a life expectancy of 12 months or less. All PALS should carefully research their individual eligibility requirements.

Myth No. 4: A tracheostomy and/or mechanical ventilation disqualifies an ALS patient from hospice eligibility.

The truth: Hospice does not cover measures intended to extend someone’s life artificially. Hospice care is palliative in nature. Therefore, if a tracheostomy or mechanical ventilation are done to extend life artificially, it is not consistent with hospice care; however, if these measures are performed as comfort measures, they are included in hospice care. For example, if the tracheostomy is done to help manage secretions, and if the mechanical ventilation is used part-time to help the patient sleep, prevent headaches, and reduce fatigue, then the measures are palliative in nature and appropriate for hospice care.
Wish I lived in CA. When I had my assessment, the nurse said they would come once every three weeks. But we could call if we had an emergency. Biggest joke I have ever seen.

Vince
 

Dave K

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Wish I lived in CA.
The hospice rules in West Virginia are actually very generous. If you go to the WV government website, you'll find that under Requirements For Hospice Care Programs, Rule 6.2.1 says "Hospice services shall be available seven days a week, 24 hours a day." Rule 6.2.2 says "A hospice shall provide the services described in Section 6.1 to the extent necessary to meet the needs of individuals for care that is reasonable and necessary for the palliation and management of terminal illness." Rule 6.2.3 requires the hospice to "assure the quality of care and the kinds and amounts of services necessary to meet the patients' needs."

See http://apps.sos.wv.gov/adlaw/csr/readfile.aspx?DocId=8717&Format=PDF

PALS in California are treated no differently than PALS in other states--their hospice providers are equally likely to try to skimp on the amount of equipment and services provided to someone with ALS. The bottom line is if a PALS wants adequate home health and hospice care, it really pays to learn the rules.
 

lgelb

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As we have discussed, Dave, the reality of what agencies under capped health plan reimbursement will provide varies. Thus, I'm afraid some of your "facts" are actually not in evidence for a majority of our users.

The Medicare Hospice Q&A is attached. It is certainly important to reinforce that anyone can challenge an agency on any point, switch agencies or leave hospice. However, eliciting any given level of competence or care in any health care system is never a guarantee so I do not think we should pretend otherwise.

Best,
Laurie
 

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GilWest

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A vent does not disqualify, but hospice companies can refuse. That was our case. The cost of the vent ate up the hospice reimbursement.
 

Dave K

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I'm afraid some of your "facts" are actually not in evidence for a majority of our users.
Agreed. For most PALS, hospice is, as Vince said, the "biggest joke I've ever seen."

It is certainly important to reinforce that anyone can challenge an agency on any point.
My point exactly. And if PALS don't bring challenges and demand more from their hospice providers, the joke will continue to be on them.

Incidentally, the Medicare hospice manual is not a substitute for the actual hospice rules. Medicare workers do not consider the special needs of PALS when they write their information guides, allowing hospice agencies to get away with breaking the rules and short-changing the uninformed PALS of their needed care and equipment. As a general rule, if a PALS thinks their hospice care is a joke, they are probably having their rights violated as patients, as consumers, as citizens, and as humans.
 

scaredwifetx

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Steve has been on hospice for about a week and so far we are very happy.

The RT has been here twice, Steve has a new Trilogy, is able to keep his same cough assist, they ordered a transfer board for Steve set him with a nurse, aide and massage therapy. Everyone who has been here is very nice and attentive to Steve. The agency is working with other ALS patients.

Steve really likes his RT. The RT said he would visit weekly for a while and that is goal is to always go beyond comfort for an ALS patient. His goal is to be part of a solution for great quality of life. Steve is now getting better care than he has ever received from the medical community and is very happy with their quality of care.

Steve also said they are afraid of me. lol
 

Manhattanite

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Thank you for posting this. It brings to mind the question: if you live in a place where hospice care is good and generous, then does it make sense at all to go through the legal rigmarole of spending down your assets to qualify for Medicaid?

If the patient chooses not to pursue ventilation and wishes to die at home, it seems Medicare would suffice to cover the medical expenses...
 

Dave K

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does it make sense at all to go through the legal rigmarole of spending down your assets to qualify for Medicaid? If the patient chooses not to pursue ventilation and wishes to die at home, it seems Medicare would suffice to cover the medical expenses...
We spent down to the point of Medicaid qualification but never had to apply for it because we managed (after a fight) to get adequate hospice care under our HMO. The keys were (1) learning the hospice rules, which are very generous if followed, and (2) having a hospice with a lot of resources (HMOs have tons of resources, but are stingy with them). I imagine this could be harder to find in rural areas.
 

Manhattanite

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Thank you Dave K. That's what I am thinking would happen in our case as well, especially since my gut feeling is that my partner has less than a year left. Lots to think about here...
 

scaredwifetx

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A huge question for me. We were told that Medicare would take over the payment for hospice. We didnt do anything to qualify for Medicaid and would not agree to even try. We were never asked or told about any financial obligations. Our doctor ordered the hospice care and two companies called us. We chose one and was entered that day. Am I missing something? Does Medicare not provide hospice at 100% as we were told?
 

scaredwifetx

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I just looked up the hospice/ medicare benefits for Texas. We were told correctly by our hospice team. Its 100% paid for by medicare. A big relief! From what we have witnessed so far, he is in better hands than he has been since diagnosed. There isnt a cure so hospice is offering him everything he has already been recieving and more. The six months or less to live is what qualified him to get in but we all know that the facts used to qualify at running is normal course, is just a number.

We were guaranteed by our Neuro and the hospice that they werent looking at any specific time frame and we all hope for longer.

We actually think the service he is receiving will give him a much better quality of life. I can yell you to know the Medicare rules in your state, interview the agencies and hold them accountable. Steve does not view hospice as end of life care. Thanks to his doctor, team and the hospice agency.
 

Cattaztrophy

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What more is hospice going to offer? I'm afraid of loosing control. My PALS doesn't ask for anything and I would like to know if there's something more that could do for him. He says he's not in any pain.
Louise
 

lgelb

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Louise, if your PALS is comfortable under your care, I see no reason to bring in a third party at this point. You have the option of asking your doc to write for it at any time. Then you can interview agencies and see if any appeal to you. No one has to elect hospice at all. We didn't.

Deb, as you noted, Medicare and private plans do pay 100% for whatever they call hospice. Where agencies/plans differ is the actual perceived and monetary value of care and advice that is provided as that benefit. It's not like an appendectomy, where there's a clear process and outcome. So it's unwise to generalize from one case to the next.

Best,
Laurie
 
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