So I have seen some statements, official from Medicare, indicating that hospice WILL cover whatever the patient needs when in hospice. So it seems that if an MD orders for instance an extra aide visit it SHOULD be covered. Also learned hospice programs get paid X (and I would like to know the figure if anyone does) dollars per day per hospice patient. So it seems that the less care a patient might require/get, the bigger the profit margin? Also seemed that patients were supposed to get x number of hours of care per day. Seemed far more than what mom is receiving. Nurse is due for a visit tomorrow and I will see what she can say. Reminder that hospice while persisting (reasonably) in additional help offers no resources, and again it seems it should be covered if ordered by an MD and provided through hospice. And save your energy from preaching that a facility is the best answer. It's not for us. And is not the question being asked. Thanks.
Hospice doesn't provide aides. You might get some respite care occasionally if they have volunteers who'll come sit with your relative while you run to the grocery store, but they do not provide aides beyond a person who'll bathe your LO and the nurse.
Hospice provides what the patient needs in terms of supplies, not personnel. They provide diapers, medical equipment, shampoo, etc., but not caregivers beyond nurse visits and bathing aides. They do not provide "X hours of care per day."
My father had hospice care, and my mother is receiving hospice care now.
Talk to the social worker assigned to your case at the hospice company. I can't believe this wasn't all explained when your LO was first signed up for hospice. It was all gone over with me in great detail for both my parents' admissions.
In 2018, the hospice care costs covered by Medicare daily are:
Routine Home Care (Days 1–60): $193
Routine Home Care (Days 61+): $151
Continuous Home Care: $976
Inpatient Respite Care: $173
General Inpatient Care: $744
Good luck to you in finding something that can match your needs.
Call Medicare, call her doctor and find out how you can get an aide.
I agree with NGE, you should find a different hospice provider. Non profit, religious based hospice tends to have more resources and volunteers to offer help.
Once we feel as you are feeling, it creates to much tension for all involved and the situation just doesn't work.
You and your family deserve to have this time as peaceful as possible and you are obviously not getting answers from this provider.
One thing that I would caution, every place is short staffed and people are struggling to meet the needs of patients. Just because you are promised that you will get help doesn't mean they are going to be timely or show at all. Just keep that in mind so you don't get more stressed out if it doesn't pan out as you expect.
The people I feel the worst for are those who are going through end-of-life illness alone or with only 1 support person who is not in good health, either. They're the ones suffering the most. I feel so fortunate that my mother had me and my family to care for most of her needs, and that our health is such that we were able to do that for her in the end. It has given me great comfort over the past months as I grieve.
I understand your frustration.
What I have been able to find is that while Medicare says online what they will pay for, or what the benefits to the insured are, the hospice company is evidently not compelled to provide all the services Medicare says they will provide.
It’s similar to the ads you see Joe Namath do for the Medicare Advantage Plans. They make a lot of sweeping statements about what all they cover, yet leave out the circumstances under which you might actually qualify for the services.
You may find a doctor who will order the services but that doesn’t mean you will find a hospice company that will fill the order.
I have been successful in getting therapy for my DH aunt and getting a daily CNA for aunt. The therapy because I knew the therapist and he made some sort of deal with the hospice owner. I don’t pay him on the side although I offered to. The daily CNA because I needed surgery, mentioned respite care and they offered the daily CNA instead. (they would have provided the respite for 5 days but I was looking at trialing ALF).
They do charge Medicare for the cna visits. I see them on the quarterly statement. The therapist charge is not listed. What aunt receives is a light session of therapy, which is all I was asking for. I don’t know if there is a reconciliation from their daily payment regarding the daily CNAs or if they still get the entire daily amount from Medicare. The service aunt has is the routine home care. She is in the 61+ day category at this point. Not in a crisis mode.
I think the extra services you are looking for might only be available in the Continuous Home Care Phase as below.
“Continuous home care: A day when both of these apply:
*The patient gets hospice care in a home setting that isn’t an inpatient facility (hospital, SNF, or hospice inpatient unit)
*The care consists mainly of nursing care on a continuous basis at home
Patients can also get hospice aide, homemaker services, or both on a continuous basis. Hospice patients can get continuous home care only during brief periods of crisis and only as needed to maintain the patient at home.”
Not every hospice provider offers Continuous home care. Some just offer the first level. Routine Home Care. Check to see which levels your provider is contracted for with Medicare. I think using terms like routine and continuous make it confusing when reading the site until you understand that is the name of the level of service.
Good luck on getting the Medicare benefits you need. Let us know what you learn.
This site might be helpful for you.
https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Hospice
In my area I have never heard of a Hospice client getting more than an hour of an aides time and that was 3x a week. I have heard that if you give Hospice a heads up, u may get extra time to run errands. But its always understood, that family does most of the work and provides a aide if needed more than what Hospice can do.
I wouldn't over worry this. Just speak to hospice. Ask how this works.
Medicare A covers hospice and covers only the hospice diagnosis. Anything treated outside the hospice dx is covered by other insurance or out of pocket. When dad caught a cold the Rx was paid for by his other ins. and him. The purpose of hospice is to keep the patient comfortable and allow them to meet the end of life with as much dignity as possible. Hospice also ordered all meds, durable medical equipment and items needed by my father, disposable underwear - again within the dx he went into hospice with.
My parents were in AL when dad went on hospice and shortly thereafter because he was physically weak he needed to be transferred to SN. He was seen weekly by the RN and LPN each and I believe his bath aide came maybe 2/week - maybe it was weekly also. I believe the nurses would add a visit as warranted by the patient's condition He saw a chaplain, got music therapy and social worker was available to both mom and dad - and they offered grief counseling after dad's death.
Whether the MD said you LO needs another caregiver will most likely not be covered by hospice - and most likely come from LO's pocket.
If you have any questions reach out to the RN or the Social Worker. I know our hospice provider: the nurse or social worker were very responsive when I had questions. The nurse if tied up with another patient usually still called back within an reasonable amount of time.
Again, if you are unhappy with the provider you have, find another one.
Best to you and your LOs.
Now they did supply all needed equipment, supplies and medications for my husband, but still 99% of his care fell on me.
And when Covid hit, they stopped the aides coming for almost 5 months, which left my son and I to bathe my husband ourselves.
And when my husband started his 6 week dying process last August, they still just came 3 times a week to take care of his picc line, and by Sept. they were coming a little more, but only for about an hour or so each time, leaving me with my dying husband, who was in such horrible pain that they couldn't get under control. There was one day that my husband was what the nurse called "in crisis," and she called her office to see if she could stay with me to try and help, and have another nurse take her next patient, and was told no, she had to leave to get to her next patient, so left she did. I will never forget that(and yes I did call and give them a piece of my mind).
We had the largest hospice agency in our city, and one that was supposed to be really good. My experience proved that not to be true, for the in home part of it anyway, but when my husband had to go to their actual hospice home a year before his death to try and get his pain under control, it was a completely different experience. They were great, and took such good care of him. It was hard to believe they were the same agency.
And I think the thing that shocked me the most with hospice, is that they billed my husbands Medicare,(for me to care for him in our home)anywhere from just over $6500 a month to start, to at the end over $16,000. And again that was with me doing 99% of his care. To me, there's something just not right with that.
I'm sorry, I don't even think I answered your question. You get me started on hospice and I sometimes can't stop, as our experience was not the best. However I like to think(and hope)that most hospice agencies are decent and good, and have the best interests of their patients in mind. And if this is not your current experience, please keep searching for one that fits the bill. Best wishes.