Not loving our first hospice experience and will be changing services (if at all possible) or leaving the program (if there's no other hospice in the area).

One of the biggest (of soooooo many) arguments is that they say they offer PT, OT & speech therapies in all their literature, on facebook and on their own website.

When I ask for physical therapy or occupational therapy to preserve the quality of life by helping my mother remain able to get herself in and out of bed & chairs and to help with her pain as she reacts badly to narcotics (hallucinations, and yet they constantly push morphine) I am told that they only offer one therapy visit.

The one visit is a PT/OT evaluation to determine if you need adaptive equipment, and they might also drop off some sheets with exercises for us to be her therapy coaches with.

Medicare has told me that they cover actual PT/OT for hospice patients (which the hospice nurse told me they didn't), and since preventing her decline with physical therapy will not stop her from dying, it will only make her time left more independent, less painful and make her feel less like a burden-adding to her quality of life.

What have your experiences been?

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Thanks for sharing the details of your journey.

You have been very informative!

Best wishes to you and your mom!

A little update:
Having left hospice, my mother's old doctor filled out paperwork (after a fresh visit) to get her in-home therapies--I wish she had suggested it previously as we would have started with this, Mom & I just didn't know it was available. I still need more help day to day with household chores to continue home care--same was true in hospice, but at least Mom has help to remain mobile and reduce pain. That's #1.

The nurse came for an eval, said no nurse or home health aide needed at this time unless we wanted it. That's a proper assessment of our situation.

I got my mother's records from hospice--it said she was not self-capable for any ADLs, and yet the nurse from this home health care service could see Mom was mobile (limited, but able to walk with a walker) and inquired about her ADLs. Mom is independent in all of them. Hospice just made it worst case scenario in the record without even asking.

The day after the nurse eval, PT assessment--already a world of difference in approach. Yes she needs PT, they will be here Friday and then again a few times a week for the next two months. OT & speech evals probably next week.

PT already helped her with tips to reduce pressure on her damaged spine while sitting and Mom seemed pretty happy when she tried it again after the therapist left, actual therapy starts on the next visit. Yay!

ElizabethAR37--sadly this one is still a nonprofit, but not the way I think of one. Definitely kept more of a profit than I expected, after looking at their 990s--the corporation is a multimillionaire. :( 

The impression I've been left with by this particular NPO's hospice goals:

*Get as much of that annual $32k cap-per-patient as you can before the patient is no longer in the program, regardless as to how they leave

*Protect & increase the net assets/fund balance-- which at the end of the year is TWICE their total annual revenue (Imagine, tens of millions in the bank, invested to earn but at what cost to patients?)

HappyRobin--Thank you--I too feel they promised a lot but gave little.  

If only they didn't make me fight for the boring medications and PT/OT, I might still be letting them get paid for almost nothing, too early in the timeline, possibly. (Hospice stiffing doctors seems a bit like biting the hand...)

I bet you were right about the recert coming for them--I hope I will be spurring some audits or reviews myself. I will report to Medicare too, thanks--I am just waiting to report to other places what the DOH finds, to add it to my complaints if appropriate.

I am also waiting on my mother's records--I requested eeevvveerything they have, that should give me their names and dates to compare to my list. My bad for not knowing I should have been timing their visits to see if that was accurately billed.

I don't know how other hospices or home-cares work, but this one--each worker had a work-only phone. They used them to text the dr back and forth for every change--I want those records too, to see what was said to be accepted, what was said that the dr would still declare morphine, morphine, morphine.

Included in the request is the full billing details for what they submitted to Medicare--so I can see how they decided that $500 extra was earned in those 12 days.

NeedHelpWithMom--so many people suggested hospice, I think we all had the wrong impression, but it doesn't change that even when I accepted what it was they do & they advertise, that we weren't getting the promised care Mom needed that they said they'd provide.

I wasn't sure she'd qualify, but I thought we'd be getting better attention and care and was pleased she was approved. She had already stopped cancer treatments 6 months ago, so this was just to help me be less alone in the care option finding (like PT & OT that could handle her delicate state--injured at the last 2 regular PT facilities...) and to help Mom with whatever comes next.

So you are right to question if hospice was right, palliative care and home health care is really a better fit--and as I was on the border about calling hospice when their marketing worked. They are regularly quoting previous client-families that said they wish they'd signed up sooner. I was so overwhelmed caring for her, that I bit--the hope for some relief while Mom gets care. Golden.  

Lucky for them I didn't even know there were options, I might have gone elsewhere first.  

Luckier, I hope, for their other patients, that I have little fear of cleaning up the poor service they are providing especially since Mom is now out of their care. I hope my fight will help others who don't have the fight in them, or don't know that what is happening, doesn't have to be.

Mom seems to be at risk of losing her mobility as it has been on the decline. She needs the strength to be mobile, as being mobile both helps keep arthritic pain and stiffness at bay, and will allow her to keep the little independence she has of getting in and out of bed and chairs so she can use her walker to get around the house.

She definitely has issues adding to a lack of balance--and a stiff body is more likely to react poorly to a bad balance moment.

She also has an issue with her arm that I really hope PT can help with as she's losing the ability to reach forward because it radiates pain.

97yroldmom--thanks for all your thoughts, I appreciate the share. Sorry to hear the company was just doing their thing while you were being trusting. I'm glad your aunt can still get in and out of bed--that's huge, and I'm sure it is comforting to have the same staff coming in for the hospice and therapy work, depending on which mode you are in. Sounds like you've done well by her.  

My mom has had more difficulty in past months, maybe it's the combination of her qualifying health issues and neuropathy, but since I've been able to see the change, I am worried that she'll lose it if she doesn't get some therapy. I am hoping this mess hasn't turned her off it, even if it is just for a few months of therapy to keep her moving. When she is sedentary, the arthritis kicks-in so movement is key.

As for the hospices not covering it--even considering my last call (of 10 calls, totaling about 6 hours in the past month) to Medicare described in my last post where they can charge extra, I have to agree about the PT/OT and their bottom lines.  

If they are doing proper Plans of Care, then once the need for therapy is established, it technically should be added to the Plan of Care and then come out of their pockets.

The Federal Register 418.72 Condition of participation: Physical therapy, occupational therapy, and speech-language pathology ( can be waived with 418.74, but I am in a tight suburban area and there's nothing in the waiver that would apply around here.

I think they are all trying to claim that the PT/OT assessment meets the requirement of 418.72 and feel empowered as no one is fighting about it--you know, because we're all in the middle of a life changing trauma.

I have been looking into a Home Health company--but have also been hesitant after this fiasco. My mother's health insurance said that if her doctor assesses that PT/OT is good for mom & that she is homebound and needs in-home therapy, then I can use a local therapy group that offers home visits without a home health care company. Luckily there is a PT/OT homecare group in Mom's plan, and a home health company if/when we need more care. 

When I reported the refusal of OT to my state--with the knowledge that an assessment for need wouldn't change the availability of it to my mom based on the nurses' and doctor's direct statements--the State started an investigation on my behalf.

Have you heard of "deemed status"?

Because this org has it, my state had to find out whether or not Medicare/CMS would even allow the state to investigate, or did Medicare have to handle it themselves.

The state DOH office seemed amazed that a deemed status org was doing the things I described, and luckily my state was given permission to investigate. They also forwarded me info on how to get the Joint Commission to review their deemed status as well.

I don't know if anything will come of it, but at least they'll be on their toes for a while. (Is it wrong to think I can file a complaint against the PT evaluation therapist too, if I get another therapist that says she needs the care? I'm frustrated about that garbage policy, and she's complicit, even if hired as an outside contract if she never says a patient needs it.)

Back with more tomorrow but--this is the new headspin this past week that has kept me from coming back to address specific (and appreciated) replies, was finally seeing what was billed to Medicare while we received bad care.

12 Days in Hospice

Billed & Medicare approved $4,700
Received      $3,000

Regular/included hospice care:

Day rate for 2023, Level 1 Care: $211.34
Days in hospice: 12
Total, based on daily rate: $2,536.08

So just about a $500 bump on the daily rate for additional billables.

After speaking with Medicare, this can happen when they provide a service not on your Plan of Care--then they can bill additional items/visits to Medicare.

Since I have never seen the Plan of Care, I have no idea what wasn't included in the daily coverage rate that they billed extra for. The claim just lists nurse visits lumped together with the daily rate so I can't see it there either.

I thought nurse visits were part of the daily payments included items, so what were the extra charges?

7/29/23 - 4:00P
From: ElizabethAR37

I think that hospice in its original nonprofit form was a different concept than it operates under today. Unfortunately, many hospices have now become "profit centers" and patients are treated accordingly. The less service the organization provides, the more money goes into the pockets of private equity corporate investors. As I've stated before, IMO health "care" should NEVER be a for-profit business! Who wants to be viewed as a "liability" when it comes to the bottom line?

We were promised a lot by hospice. We got a lot of hot air. Several good nurses though and a lovely volunteer. After we got the Nurse/Case managers to understand the medication issues, they did not push meds. Didn’t do much else though. Our hospice was known, as it turned out, for stiffing the local doctors.

Exactly two years after my mom was signed up and less than two weeks after having being been recertified yet again, hospice kicked her out as miraculously no longer dying. I firmly believe they were about to be audited by Medicare.

If you’re in the US, you can report the hospice to Medicare, which cares a lot about fraud because it costs taxpayers millions. Make sure you have info like names, dates and details so it’s not he said-she said.

Hospice can be a blessing or a waste.

Thank you for the responses--a little overwhelmed but will be back to respond when I have a free moment to think clearly.

Who recommended hospice? Is she ready for hospice? Would palliative care be the correct way to go?

We had success with Home Health and Rehab at a facility for my mom.

What are you most looking to address, strength and balance issues or pain management? Although in certain circumstances PT absolutely helps with pain.

Can you fill in the blanks for us?

Best wishes to you and your family.

Hi grimmy

I share your frustration. I have posted a little on the forum about my experiences with home health and hospice services when I see a message such as yours. The response is not great and the subject veers off to trying to convince the poster that pt is some kind of hardship on the patient (who is after all near death so why put them through it, they will opine) and that the worn out caregiver must be in denial, never mind that Medicare clearly states PT is available and the patients do benefit.

On the website, you will read that pt is covered for hospice patients. Yet the individual hospice companies are private business and it appears they can provide whichever services they choose w/o losing the ability to be compensated by Medicare. Medicare pays for what they do provide.

The best I can figure out is that they receive a flat rate (more at diff stages of hospice care) and then they spend the money on the services they want to provide.

The hospice companies ability to be licensed by Medicare to offer hospice services does not seem to be dependent on offering all the services that Medicare promises.

While there is competition among the hospice companies and some do offer more than others, they seem to have all banded together to NOT offer PT/OT services and somehow they don’t get enough push back to change their position.
418.72 must be cancelled out with some loophole that allows the hospice companies to proceed w/o compliance.

My experience on this issue.
While my mom never went on hospice she had Home Health through a company that also had a hospice group. Part of her home health was PT/OT. The OT therapist was at my moms house two or three times a week for several years. So I got to know him. My mom passed in 2015.

I used the same HH company for my DH aunt starting around 2012, 2013. Aunt has dementia and it slowly has affected her ability to walk. So she also had therapy on a routine basis.

I asked HH for more baths for aunt. She had become totally incontinent and was bed bound. The RN told me if I would switch aunt from HH to hospice she could get more CNA visits. I didn’t think aunt would qualify for hospice. The nurse assured me she would.

I received a call from a “community educator” to explain the services of hospice. All the services aunt had with home health were also available with hospice. Even PT I asked. She assured me hospice included PT.

When the paperwork was brought out, I started asking about the therapy. The nurse was uncomfortable. She explained that hospice didn’t cover PT. I knew I could cancel hospice at any time and I wanted aunt to have those baths so I agreed to give it a try while I worked on the PT situation. I felt lied to by the “community educator”. I surmised that her position was basically marketing and that while Medicare listed pt as a benefit, the private hospice company did not offer it. It also seemed the RN who originally suggested hospice was eager for aunt to make the transition and would be compensated. So I knew my home health/hospice company really wanted aunt to transition to hospice and the reason was money. But I also knew the extra CNA care was needed so I went with hospice.

I called my moms therapist and told him what was going on. He was now working at a NH near aunt. He worked something out with the owner of the HH/Hospice company and she got therapy. Later her house flooded and she had to go into facility care. She still has the same hospice co and still gets a daily CNA visit. She has gone off hospice a couple of times for different reasons and while off has therapy. Then back onto hospice. At this point she does not want therapy. She is still able to transition from the bed to a wheel chair to go for her shower and the therapist stops in to say hello on occasion. If she were in pain as your mom is I would keep pushing for it. I wish you luck on your law suit.

If you sue, I hope you win.

So the PT/OT evaluation went as expected--no therapy will be given regardless of need as is their policy. It's not that they can't, not that she doesn't need it, it is that they choose not to provide it as it is better for their bottom line,

The nurse who told me "medicare doesn't pay for physical therapy" was wrong--she either knows not that they get a daily rate regardless as to services provided, or she chose to lie to reduce the hassle of an unhappy client.

At this point I want to sue even if it is just for my distress--they have destroyed me with the constant lies and bad service. How can I properly care for my mother when I am feeling so distraught? The program is supposed to support the family, nothing was offered to me, except that I had to battle for every little thing my mother got. I could have done it myself with less effort and less stress--I was hoping for some relief, a cooperative effort to care for my mom.

They got $200 a day, I got the opposite of what they advertise--not quality of life care for my mother, not treatment plan tailored to her needs, only two people feeling worse after their program than before.

I understand that the dr must order it, that article was just an example of it being appropriate in some cases during hospice since I keep hearing that there's no point in having PT or OT for a hospice patient.

My mother's PC ordered it before she entered hospice to help her with pain and mobility, she does still need it.

Maybe I didn't explain my entire thought well enough--my head has been swimming trying to get them to offer anything except morphine, or my last line got overlooked.

The hospice's rule, as explained by nurses, the dr & the social worker--no one will get PT or OT.

It's not based on patient need. They advertise physical therapy and occupational therapy as part of their hospice services, but when I ask for the advertised service I am told the just do the evaluation appointment and you will never see the therapist again regardless as to whether or not getting PT or OT is in the best interest of the patient.

They get paid a flat rate per day from medicare for each patient, that is to cover services needed--and according to the Federal Register offering PT is a legal requirement for being a hospice company.

I'm interested in whether or not anyone else needed it & got it, got only an evaluation or were refused it outright as company policy.

418.72 Condition of participation: Physical therapy, occupational therapy, and speech-language pathology.

Physical therapy services, occupational therapy services, and speech-language pathology services must be available, and when provided, offered in a manner consistent with accepted standards of practice.

grimmy236, it doesn't matter what you've read in any article about PT... her doctor has to order it as medically necessary for her situation. Massage sounds like the right strategy as long as the masseuse is experienced with the elderly.

Thanks for the reply. Cancer and chronic kidney disease, I am caring for her at home. PT would be for pain management and quality of life. I am disabled and running her out to different doctors and facilities while caring for her everyday needs has been overwhelming for me physically so we reached out for help.

No help with homemaker services covered by medicare, they are refusing PT, the only treatments they are offering are drugs and now massage therapy but she's wasting and there's little muscle left to work on--and it took a month for them to get the massage therapist here. 33 days to meet the doctor, still haven't seen a plan of care nor what services/medications/treatments they've decided she's eligible or not eligible for, not for the lack of asking.

I had to fight to get her tylenol in a form she could use--I mean a two week fight over not wanting her tiny meals ruined by ground pills instead of just being given liquid like we asked for on day 1 (when they then sent large uncoated pills for the patient with swallowing difficulties).

It was ordered by her PC before she entered hospice but the therapists were not prepared to handle an elderly person gently and they injured her at 2 different facilities with lack of care and attention--it didn't have to be that way. I thought hospice PT might know how to help without hurting her again.

She wants PT, and according to medicare it isn't stopped for not progressing--it says "maintains current function or slows decline". (

Her comfort would be pain relief with less drugs--the bad reaction to narcotics is not one she want to risk unless she's in severe pain chronically. Her pain is managed well enough with OTC meds at this point except for a spasm that happens when she tries to reach out, which might be helped by PT/OT as well or better than covering it up with morphine.

I want to maintain her abilities of self care because she's rapidly losing the ability to get out of a chair and bed by herself. She will feel like a terrible burden, and the quality of life will be nil if she feels that and can't self-ambulate--it's already bad now, with how she feels useless. Hospice is supposed to care about her quality of life, therapy would improve & preserve that.

Articles like this one give good explanation why pt/ot are not useless at this stage:

First, can you tell us why she's in hospice? Usually hospice is not a place where PT is offered... it concentrates on comfort and pain management.

Next, PT conducted by actual therapists is something that is medically needed and therefore ordered by the primary physician. Medicare and other insurance providers stop covering PT the minute the patient is 1) non-compliant or 2) not progressing.

Perhaps what's happening is that the hospice service is housed in the same facility as a rehab center and this is confusing you. More info about how your LO came to be in hospice will be helpful.

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