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Hi all, have a question about rehab. My FIL will be discharged from the hospital and sent to rehab soon, for physical therapy. He is not on Medicare, he is on Medi-cal. It appears he is not going to cooperate with physical therapy. He’s basically been laying in bed for a month and before that he was having mobility issues. He keeps refusing speech and occupational therapy at the hospital and it seems like he’s given up. He’s only 64. The speech therapy is because his cancer has caused a very rare condition that makes it difficult to swallow and talk. I can’t recall the name of the condition but it starts with an M. Anyway so when he goes to rehab, what happens when he refuses to participate? Do they basically show him the door? I assume they send him home and it is what is. He’s also supposed to start chemotherapy because of the rare condition. I don’t think anyone of his kids is managing his care and my husband is in no condition to do it. My BIL has POA but isn’t doing anything but continuing on with his life (not that I blame him to be honest). I’m just curious what’s next if he won’t cooperate when he gets to rehab. I know how it works when you are Medicare patient but like I said, he’s not on Medicare yet. Thank you.

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due to his cancer diagnosis I feel he may be suffering depression and should have been put on an antidepressant. Depression and anger which may manifest as refusing treatment are part of the grieving process of loss, which includes losing one's health. I suggest you talk to his doctor and suggest he may be depressed. If nothing is done and he continues to refuse he's headed straight to the nursing home. bottom line patients have the right to refuse, and believe me no therapist is going to force the issue on them. They will simply chart "patient refused" and move on to the next.
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worriedinCali Feb 11, 2019
I cannot talk to his doctor. It’s not my place. He is still in full control. if he cannot make decisions, he has designated my BIL his POA. The hospital has made it clear they will only speak to BIL. I don’t doubt he is depressed, honestly I think he moved out here knowing he couldn’t talk care of himself and he thought his kids would step up and do it and that is not going to happen. He didn’t plan or expect to end up hospitalized for 2 months and then moved to a nursing home. He did have plans-getting closer to his children and grandchildren but his poor health has prevented that. I do hope the professionals recognize the symptoms and address them.
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worriedinCali: I don't know the time limit on when a patient gets a cetain number of chances to cooperate. But it seems to me as he's on a low income insurance program, Medi-cal, he's lucky to have that.
Now on the other hand, my late mother, a Medicare patient in an NH, got zero chances and was told "you're too well to stay here." THEY WERE WRONG-DEAD WRONG SINCE SHE SUFFERED A STROKE 48 HOURS AFTER THAT STATEMENT AND DIED. His doctor should be told the details before it comes to the time when he's asked to vacate.
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worriedinCali Feb 11, 2019
OH Llama I am so sorry for your loss!!! Someone made a bad decision there! That is horrible. It is really scary! I will definitely make sure that before he is discharged, his doctor is consulted. He’s still in the hospital as of today 2/10, still has the chest tube. He’s still getting chemo for the aphasia but his voice has gotten worse not better! No one has told us anything since the meeting with the palliative team where they tried to get his kids to take him home. My husband says they are still looking for a rehab to take him. I know that your insurance shouldn’t have any impact on the level of care you receive but unfortunately sometimes it does. I had Medi-cal for prenatal care for the first 20 weeks of my first pregnancy (couldn’t enroll on hubbys insurancd until open enrollment) and basically got told to go to the ER anytime I thought something was wrong! Had horrible cramping and bleeding, doctor refused to give an ultrasound. 2nd pregnancy I had private insurance and got whatever I requested. There was quite a difference in the way I was treated!
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Worriedincallie; Hi I think if the patient refuses PT 5 xs then they cut them off I may be wrong....maybe 3
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I don't know about Medi-Cal, but with Medicare, a patient can be discharged if they aren't making enough progress. In my opinion, my mother was doing the best she could after fracturing her hip. She could walk, but not for long as the only way she was able to manage pain was with tylenol. All other pain meds sickened her. At the age of 88, they were ready to discharge her after only 18 days of rehab. Medicare policies can be very cruel. My advice is to question the discharge, if it comes to that, with Medicare and when they deny your request for your loved one to stay longer which they pretty much always do, file another appeal. Maybe in the case of your BIL, the hospital social worker can give you some advice as well as the social worker at rehab. It sounds like he is depressed and who wouldn't be? Do everything you can do to bolster his mood and make functioning easier. He needs easier ways to communicate and strategies to pass the time each day.
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His lack of planning does NOT equate to him coming to live with you. YOU determine who lives with you.
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worriedinCali Jan 10, 2019
Yes agree, you are 100% correct. He is not coming to live with us. I just wish he get it together and figure out what HE is going to do. Or have my BIL do it since he is the one he wants to do everything. If he has a plan, then we won’t get to a point where he or my in-laws are asking for him to come here. I would like to avoid being put in that position.
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OK, he gets a Psych eval and still refuses treatment. He has a right to die the way he wants.

I have a friend who had a lumpectomy before the holidays. A scan showed that there was no Cancer in her body. She is 77. She researched the side effects of radiation and the chemo pill u take for 5 yrs. She talked to the radiologist and the oncologist and chose not to go with either treatment. She just went to the surgeon, a woman, for a follow. She berated my friend for not doing the treatments saying that she would have taken the breast if she had known she wasn't proceeding with treatment. What! My friend was given choices and felt the side effects were not worth it.

I am so tired of hearing about that "one little cell". My sister went thru 8 months of agressive chemo even after her scan showed no cancer. She couldn't work. She went back to work in July. Started having pain in Sept. Died in October. She lived a year and a half after diagnosis. Would she have lived just as long without the treatments? Its all about the quality of life. How can ur natural ammune system fight when the white blood cells are distroyed too.
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worriedinCali Jan 10, 2019
This isn’t about him dying though. He’s not dying, he’s not terminally ill and he has a very treatable cancer that is stage 0. other than difficult swallowing, it’s not the cancer affecting his quality of life. It’s him not taking care of himself and moving out here with no plan other than to live with my BIL. He’s literally laying in a hospital room refusing therapy because he thinks it’s pointless and won’t help. He thinks he is going to go home to my BILs house. With a feeding tube and no one to administer the food and make sure the tube is working correctly. He’s not trying to get himself a bed in a nursing home, he’s not trying to secure home care. He’s not asking questions or trying to plan for the future. And that is huge a problem because it has been suggested he come to MY home. I guess we will have to wait and see what happens when he gets to rehab. Maybe he change his tune.
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The pt can refuse about 3x. It has to be a good reason other than, I dont want to. The doc get notified and usually has a chat with the pt. So does the staff. He will then get discharged from therapy. Not from nursing home.
They need to see the pt is doing therapy and making progress to get paid. They also need that time slot for a pt that will do therapy. They waste time trying to do therapy on someone who resfuses.
I agree that he needs psych consult. He is not doing well. Does family visit him? Does he have any support? That could be the key to wanting to survive or just give up.
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worriedinCali Jan 10, 2019
He’s not going to an actual nursing home, it will be a rehab facility, out here we have actual rehab facilities and the stays are only temporary. I’m not sure how it is in other city/states. This is why I wondered what would happen if he refused to participate. Wondered if they would release him and someone would have to go pick him up or if they would transfer him to a nursing home. I know he can’t just stay in the rehab because it is not a nursing home.

It’s a complicated situation because he has only lived in this state for about 6 months. Prior to that, he saw his children maybe every 2-3 years. He and my MIL were divorced, he was not around much when the kids were growing up so there isn’t exactly a strong bond Between them. If you were to ask my husband, he would say his dad was never around. My BIL is the closest to him. My SIL has been making more of an effort to have a relationship with him now that her mom has passed on. She is the youngest and never really considered him her dad. She had a lot of anger toward him. My husband is neutral. All 3 have supported him and visited him in the hospital, not every day because it’s an hour away from BIL and SIL. He is definitely not receiving the same support my MIL had.

My concern is that he obviously cannot take care of himself and if he’s not going to participate in PT and OT, he’s not going to miraculously get his strength back. My BIL and SIL work during the day and I think They are thinking they can either have him come to our house since I am SAHM or he can go back to my BILs house and have caregivers but.....who do they think is going to pay for the caregivers? They don’t work for free! His income is over the $1242 month limit for IHSS.
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When my father went into a nursing home (due to having become extremely weak after being in a hospital for a couple weeks and just generally "failing"), physical therapy was attempted, but after a couple days, the comment was made that "he is simply incapable of doing anything" and it was terminated. (LOL I guess they realized it would be sort of like "trying to whip a dead horse"!)
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Worried:

He's got Multiple Myeloma, stage 0? It's a very manageable disease; does he know that? Has the oncologist who is treating him explained what is going on in a way that he can understand?

Has anyone suggested a psychiatric consult? Sounds like he's quite depressed.
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worriedinCali Jan 10, 2019
I don’t know if he has been assigned an oncologist yet, I am thinking he has because he’s going to start chemo soon but he’s not in the oncology ward of the hospital. It’s comolicated because was diagnosed in another state and moved to Ca last July. He was diagnosed in October 2017. His health problems started before he moved and treatment was delayed because he was told to wait till he got out here.

since the cancer is “just there” or “festering” the doctors say, he was told it didn’t need to be treated. He moved out here in July 2018 and hadn’t seen an oncologist or anyone else about his cancer but he has had medical treatment for bladder and prostate issues. He’s starting chemo, I believe it be given as a shot, only because of the rare condition the cancer caused.

No no one has suggested anything. My husband is only able to go see him once or twice a week. His siblings both work and have young children too and live around an hour away from the hospital. They call him & check in during the week. I think my BIL visits on the weekend, not sure about my SIL.

I don’t think any of them realize that someone needs to step up here and get involved.
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Treatment will be same. If a patient does not cooperate then the staff will have to write in their notes which the doctor and insurance company gets notified. Since the facility may not get paid for the services they will have discharge the pt.
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I can empathize. My 97 year old mom is refusing to participate in pt and ot. She says she’s an old woman and they are trying to kill her. All she wants to do is lie bed and have someone bring her cappuccinos. She talks about getting up and walking but when they come for therapy she says she doesn’t feel like it. Good luck. I hope you can find something that will motivate your LO.
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worriedinCali Jan 10, 2019
Thank you! Wow 97 years old! Part of me understands why she wants to lay in bed all day but I empathize with you too. If she’s wanting to get up and walk, she needs to participate in OT & PT. It’s frustrating when they have these complaints but they don’t have the motivation to do something about it. That’s my complaint at the moment. I don’t know what my FIL is thinking! He was in bad physical shape before he entered the hospital and he’s in worse shape now. If he comes home, there wont be able one to wait on him hand and foot! He’s going to have to get himself up and into the bathroom and if he’s hungry he’s going to have to fix himself something to eat. Part of the problem was, he wasn’t eating during the day when no one is home. And he wasn’t asking for help when they were home!
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Your FIL maybe depressed. But, he has the right to turn down care. He scan turn down rehab. Why even go if he isn't going to do what he should. Melanoma is a very serious Cancer. If he takes Chemo, what are his chances? Is being sick most of the time worth going thru Chemo and it does nothing. These are his decisions. He should get his life in order.
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I am sorry about your husband, I know you are very knowledgeable and may have this on your menu already.

My husband was told he would be in a wheelchair by age 50, broke his back twice doing construction work and 15 specialist said that surgery had a greater chance of doing more damage than good, so basically inoperable.

Anyway, I started making him whole food smoothies and bone broth. Changed his life. He is active and healthy, I give The Lord the glory because He did touch his back on a trip to Israel but i believe that his good health today comes from getting the nutrients that he needs to be healthy.

Just for your information.

Also, ask your FIL to sign a HIPPA release for your husband. There is no earthly reason that his son shouldn't be able to get information. Does not effect POAs at all. Our attorney drafted one that doesn't expire, their forms(hospital, doctors) are only valid for 1 year. One of those things they don't tell people.
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worriedinCali Jan 10, 2019
Thanks isthisreallyreal. If I could get my husband to the pope for a blessing I would! His back isn’t broken, his first surgery, in July 2011 was for a herniated disc in the lower back. He had bone taken out at that time. Since then he’s developed arthritis in the same spot and IIRC another herniated disc? To be honest we are quite sure what exactly the problem is because it’s been a few years since the last MRI and workman’s comp just denied an MRI because of the incompetent nurse practitioner he sees every month. (She put in the request that he wants to continue working which is not the case. He can’t physically work at this time!! He said he wants the surgery!)Another request with the erroneous statement removed has been submitted and now we are waiting to see if they approve it. As far as a healthy diet—-hahaha I wish! I’m very health conscientious while he’s a meat & potatoes kinda guy. He won’t do smoothies or eat vegetables!
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They'll try for a few times, then discharge
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The way this was explained to me is that there is a care plan. If the patient doesn’t do the therapy for whatever reason then he will be discharged as therapy is not the same as custodial care.
Having said that, it is sometimes considered therapy if the patient will just sit in a chair. If that’s all they can do.
Also, Medi-Cal May provide for custodial care in his circumstance. I don’t know.
I was told it is fraud for the rehab to bill for therapy they aren’t able to provide.
If your FIL is not incompetent, then the POA can’t force him into any situation FIL doesn’t agree with. Like he can’t force him to take the chemo.
FILs situation sounds very difficult. I’m sorry he is going through this and doesn’t appear to have hope.
WorriedinCa I know you are a frequent poster. So you know about “Being Mortal, Medicine and what matters in the end” by Atul Gawande. If you haven’t read it, please do. Even if you only go online and look at the five questions it might be helpful for your FIL and your husband.
The first one is along the lines of Do you know where you are and what your condition is?
It also helps navigate cancer treatments with doctors. Doctors are often not very comfortable letting a patient know how successful a treatment is etc.
Keep us up to date on how he is doing.
Hugs
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worriedinCali Jan 7, 2019
Thanks 97yearold mom. I know that book is highly recommended here and I plan to read it very very soon. As far as POA, my BIL POA has it, and the reason I mentioned it is because he is the only one the hospital will communicate with. He’s the one FIL put in charge on paper with the hospital and he is the name on the POA and HIPAA forms. So our hands our tied here. Someone from the hospital called my husband on Friday morning thinking they were calling his brother and they were rather rude to my husband and wouldn’t talk to him when they found out he wasn’t BIL. It was upsetting because we thought there was an emergency! Anyway there hasn’t been a care meeting or anything, BIL just calls FIL and asks him what’s going on. FIL is still competent. He’s got his all his marbles but he can’t talk well and like I said, he seems not to care much. He doesn’t ask the nurses or doctors any questions. I just like to know what the plan is and what is going to happen. Especially now that my husband is out of work on medical leave with debilitating back issues and hopefully having his 2nd back surgery. We can’t take on FILs care or bring him home with us, I won’t have it, I can’t have it. Got my husband and children to take care of. Thank you again for all of the info!
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Will they even send him to rehab if he won't cooperate in the hospital?

I would be getting the answer to that 1st. May be the rehab doesn't even happen.

Can you call medi-cal and find out how they determine if care is provided/paid for?

Good luck, so sad at 64. Many good years ahead with hard work.
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worriedinCali Jan 7, 2019
Thank you! His cancer is stage 0, it’s “festering” they say. He has multiple myeloma. So he hasn’t had any treatment yet because the cancer is festering. But he will be getting chemo soon because of the rare condition the cancer has caused. Today when we visited, PT came and he refused it. He also told us he is refusing speech therapy because he doesn’t think it will help. I almost turned to my husband and said “well then what is the point of him going to rehab if he’s not willing to participate?”. He needs physical and occupational therapy for sure, to get his strength back and get him back on his feet. He’s got a lot of years left if he would start taking care of himself. His swallowing condition is irreversible so the feeding tube won’t be coming out so he’s got to learn to live with that too. But he’s got no motivation. And who is paying for all of this? The tax payers? Why send him to rehab at the tax payers expense if he’s not going to comply and get better? I know it’s terrible to have that thought process but I keep thinking about the cost of all of this. Good idea contacting medi-cal, I will do that. Just trying to prepare myself for what is to come. Thank you very much!
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