Options for patients released from Hospice care?

Grieving, I am so sorry. I just want to acknowledge your story and tell you that I, and so many others, can relate because we begin to feel so helpless and beaten down when we have no one by our sides, helping us fight. I know you did the best you possibly could. I also feel guilty for not being strong enough to do things I feel I should be doing...or should have done. Just know you did the best you could. God bless.

Katie222, Keep doing what you are doing as long as you can. My mom was in the same condition: sound mind but bedridden due to a fall and broken hip. I am an only child with no relatives or friends to help out. I felt I could not care for her at home since I am not well myself. The doctor put my mom in an unskilled facility, turned her care over to Hospice, and abandoned her.

What you should know is that Hospice provides no rehabilitative of curative care. They are there just to provide comfort care and pain relief primarily through the use of narcotics.

I stayed with my mom every day. She died after a month. I was extremely close to her and feel guilty for not having been able to do more for her that may have extended her life or at least provided her with the comfort of spending her final days at home which is what both she and I wanted.

Kannie, Somewhere along the line last year, my Mom was diagnosed with Alzheimers, though she recognizes us still. She is diabetic. She was diagnosed with inoperable abdominal cancer 13 years ago and the tumor is still there. She has hardly been eating the last few weeks. She has been on hospice for too a few months.
I have heard of people being on hospice for 3 years in some cases. I hope you get the help you need soon. That is how I take things...one day at a time.

Katie222, is your mom of sound mind? Is hospice considering her terminal? Your mom sounds a lot like my mom physically. My mom's mind is good. I have had people tell me to look into hospice for all the reasons you mentioned, but I don't consider her terminal. Mom is non rehabable. In fact she just had a five day stay in the hospital and I was hoping for some rehab to help just give me some extra help but rehab wouldn't even consider her. We have aides helping which is working for now but I'm not sure where we will go from here. I'm just taking one day at a time.

Thus far I am so glad for hospice. My Mom going through rehab in 3 nursing homes and at home was a terrible time with stage 4 bedsore and a broken leg suffered in NH #2. . This awful rehab mode went on for about 11 months until someone finally listened to me about hospice. Mom was just not able to stand or walk and getting her to doctors and specialists appointments in a wheelchair with a special hired van was a huge ordeal. Mom hated the PT sessions, and we had a couple of real fools as PT therapists. The hospice staff is much more understanding and compassionate about her condition. Everyone is different and some people are rehabable...but Mom clearly was not, and thus far hospice has been a relief for her as they keep her clean and comfortable when she can't be moved. It is too bad that one bad hospice company gives all the better ones a bad rep. Those companies that make mistakes like losing someone's body should be dealt with legally.

They sent the body to the wrong place?! OMG! How could that happen?

Hospice carefully wrote down all the details of after-death plans in our very first interview. They contacted the mortuary shortly thereafter to confirm expectations. They worked with the research clinic where the body was to be sent for autopsy. When I called to report that my husband had died (in our home) they checked their records and confirmed again where the body would be sent and they took care of requesting the removal. The mortuary showed up within an hour. I was very grateful not to have to be dealing with the details at that time.

Your Dad's body was LOST?! OMG. I think that would put me off hospice, too.

I am truly sorry that you went through such a traumatic experience. I will be interested in what the attorney comes up with.

But I still maintain that it is not appropriate to blame all hospice programs throughout the US for the terrible experience you had. Many people who use this forum have been or will be faced with end-of-life decisions for their loved ones. A campaign to destroy the reputation of the hospice concept itself is really not helpful.

I hired my attorney to hire a nurse practioner to look over my dads medical records to show all the unnecessary medications that were given to him AFTER I found out and blew a gut and they still gave it to him. Also their "TOTAL" negligence of sending his body after I kissed him goodbye for now to some far fetched funeral home I had NEVER heard of before. He was in their funeral home for 2 weeks in the freezer UNTIL the police got involved and found out that HOSPICE made a terrible mistake and sent him somewhere where he should NOT have gone. He was Jewish and had to be buried in no more than 2 days after his passing. He was buried 2 weeks later as they could not find his body. I was devastated and still to this day 2 months after the fact see a psychiatrist and lost 15 pounds. I cried and cried and cried and wanted to just die! Thank God for my dog and attorney. I HATE them! I have also heard horror stories from others about hospice too.

blondmedicdoglv, what does the attorney say about your chances of success? What are you trying to do? Many of us would be very interested in this story.

Jeanne, How do you actually know if the program is good or not Until your loved one is already in it? They ALL make sure they seem good but in reality they are NOT. I lost my father after they gave him adivan 2mg when being a retired R.N. knew the dose was too high. He should have gotten one half to one mg. and then the next day I specifically told them 'DO NOT' give any more and NO morphine. I left him with the man I trusted from Hospice at 9:15pm and at 9:40 pm got a call my dad had passed. And then when I looked into it, I found out he HAD given my dad morphine so I HATE hospice and hired an attorney!

Yes, Kannie, that is what you are hearing. " if a person is placed on hospice, even if they are not necessarily "terminal," that hospice ends up making them terminal with all the meds." But just because someone here perceives that as the case they experienced does not make it generally true (or even true in their case.).

My mother was discharged from the program because she improved to the point she no longer qualified as "terminal." So what happened in her case? Did the Hospice program fail in their alleged mission to bring about her death? Nonsense! And we will be calling them back in at the appropriate time.

That may be the key. The "appropriate time" is when they are terminal. That can be difficult to judge, harder with some diseases than others. But if they are in fact in the terminal stage of their disease, the outcome is very likely to be death -- death because of their disease; not because of anything Hospice does. People who are surprised their loved one didn't get rehab services on hospice simply did not understand the terms of the program. If you want your loved one to get PT and OT, don't sign them up for hospice care. If you don't want your parent to get strong pain-relievers, don't sign them up for hospice care.

IF you believe that your loved one is in a TERMINAL stage and you want only comfort care, you don't want to drag them to doctor's appointments and ERs, you accept that no medical intervention will keep them alive with quality of life, THEN is the time to sign up for hospice.

Being a human institution, hospice is not perfect. And no doubt there are some bad programs out there, or bad practitioners in good programs. But it is absolutely essential that you understand the nature of the program before you sign up for it. Then you will recognize if something bad is going on and report it.

I've already posted once, but the hospice I use gave me a "goodie bag" so to speak of meds. They told me to administer as I see fit. I haven't given anything. I'm talking about morphine, Ativan, and Seroquel. I'm learning the hospices really are different.

God bless.

Hi Kannie, it depends on what you want hospice for. I had them less than a week and got rid of them. They send 2 different Aides who were considered "so experienced"
Neither one could hoyer mom into her wheelchair or turn her to bathe her. You also cannot call an ambulance because you have to call hospice. If you call an ambulance, without their permission, you will pay for it out of pocket. I didnt like that and I also didnt have any help as their aides were awful. The 2nd one said she hurt her back in just one morning turning my Mom, aweyiyi! If you all who wrote has a loved one who cannot walk, medicare covers a hoyer lift once your doctor write an rx for one. We got a hoyer , wheelchair and hospital bed. I will have a different hospice once my mom is at the very end, who knows when that it, but I do want her to go in her sleep with no pain and if that means drugs, thats fine with me. My Mom is a sweetie, cannot talk or walk, is incontinent and hardly knows whats going on but she has been this way for years. She loves my touch, music and laughs and smiles. IF she were to not wake up yet be breathing, I would call hospice but not until. Hope this helps someone.

So, is what I am hearing is, if a person is placed on hospice, even if they are not necessarily "terminal," that hospice ends up making them terminal with all the meds? I was told to try and place my mom on hospice. Never have done it as she is not necessarily terminal. With her diagnosis she could die any day or live another 10 years. I didn't want them involved until I knew she was terminal. If what I am hearing is correct I guess it's a good thing I didn't involve them.

My heart goes out to you.

I learned too late that the mission of Hospice is to facilitate and expedite the dying process, nothing more. Hospice provides NO REHABILITATIVE CARE AND NO CURATIVE CARE whatsoever. Hospice will administer strong drugs like morphine and opium which they justify as a means to reduce pain. In some cases, like mine, they are used to shorten the patient's life span.

My mother was like yours. She broke her hip and was unable to walk or get out of bed. She was in no pain from the hip fracture which had been surgically repaired, was perfectly lucid with a clear mind.

She was discharged from a skilled facility after 10 days because she could not walk with a walker and was determined not making progress.

She was placed in an unskilled facility and I was deceived that Hospice would provide more help in the form of nurses and aides, not their real mission. She died a month later.

If I had known what the mission of Hospice was, I WOULD HAVE NEVER agreed to sign her up. I am an only child and had no one to help in making these difficult decisions at a very stressful time and, like many others, had no idea about how Hospice operates.

Since Hospices are a private for profit federally funded program, people who are dissatisfied with Hospices' operation should contact their U.S. Senators and Representatives and request them to launch an investigation of how Hospice is structured. Also, AARP and AMAC should initiate an request to Congress for public hearings on Hospice.

Hospice is for the care of persons that are considered to be terminal. and is a means of keeping them comfortable through end of life. Rehab is not a part of hospice care. Since your mother is no longer considered terminal you may wish to bring her home and hire in-home care or you may want to consider a Residential Care Home commonly called Board and Care Home. Contact a local placement agency for help.

I am one of those who HATED hospice. I got my dad into an ALF before he passed and hospice was still with him. I liked only one hospice nurse but the rest gave him potent meds and being a retired RN I put in a request to stop these meds. They did for one day and when I left the next evening he was given again the meds and I got a call 20 minutes later he had passed. I was hysterical and hired an attorney. I have to see a psychiatrist because I was so distraught and still 2 months later I still am. Medicare ONLY pays for a certain number of days and then you are on your own. See about a skilled nursing facility or an assisted facility but usually they do not take in people who can not function on their own. Or better yet as I did with my mom get names of GOOD, CARING home health aides or CNAs and do care at home like I did. An aide in the a.m. to bathe and dress and feed her, I also got her into in the afternoons a day care program that took her in her wheelchair came and picked her up and dropped her off, had activities to do and fed her lunch. She got home by 5pm and I was there for a bit. At 6pm another aide came, fed her, bathed her and put her into bed. I was always home before the night aide left and then I was there throughout the night. Then it started all over again the next day and so forth and so on until she transitioned. With hospice they love giving loads of meds for whatever they think the patient needs them for pain, anxiety, frustration and the list goes and on and on. Get rid of hospice IMMEDIATELY if your loved one is NOT ready to die! The VA will help if someone was in the military. They were wonderful for my dad. Good Luck

I should have said "She MIGHT still die of the infection"

Katie222, there are many hospice companies around, but they are all governed by the same Medicare rules regarding criteria for collecting Medicare payments. Maybe a different company would interpret the medical record a little differently, but it seems to me if there were a legitimate way that the patient is qualified for hospice, the hospice company that is providing it now would find that way. Surely they don't want to lose a client.

As for them being liable for an infection or other medical event after the discharge, no. They are not promising that the patient won't ever die ... obviously the patient (like all of us) is going to die of something at some time. When it becomes clear that death is imminent (again) the patient can be readmitted to hospice. She will still die of the infection, but with comfort measures in place.

My mother was on hospice for a few months, last year. The hospitalist who released her after a hip injury thought she might not live through the end of the week, let alone six months. Ha! Shows they aren't always right! She improved significantly while on hospice, and they told us they needed to release her from the program. They delayed it a few days so we could arrange for getting some of the things they were providing and would no longer be providing. That was more than a year ago. Mom, 95, still has dementia (of course) and is now unable to walk at all, but there is no sign that she is likely to die in the next few months.

(The hospice person told me that 1/3 of persons on hospice leave the program without dying. I don't know if that was just their program or a national statistic.)

(And, BTW, my husband died sooner than hospice expected him too. Accurate predictions are hard to come by.)

We did not have the situation you face, SpeicailKinCHA. Mom was in a nursing home when she went on hospice and remained there when she came off. You are now in the situation my sisters and I were in when Mom could no longer be cared for in a private home. You (or some family member) has to figure out what the best care situation is for her. Should she/can she remain where she is, with some in-home care? Would she be better served in a nursing home? These questions involve both medicare needs and financial resources. Her options are the same as a person who has never been on hospice. You are fortunate that you have several weeks to search, discuss, and decide this.

Best wishes to you all. If you have specific questions about the process of deciding what to do, post again. Lots of us have been through figuring out how/where to care for elders.

I've never heard of a person being released from Hospice, since Hospice, generally as a rule, signifies end of life care.

Ferris, as you know, "I'm sorry for your loss" is something you say after a person has died. HOW DARE YOU say that to this poster, in the midst of a nightmare, with a living parent!!! For you to make a casual pronouncement of impending death, and tell the poster that pain medication does not change a terminal diagnosis, as if she does not know that, disgusts me.

Reverseroles, I can't find a link to message you? I'm on my phone maybe that is why.

I will try from our computer once I get home. We have 4 hours of help per day as well. Well, 3 hrs on Monday and Wednesday. 4hrs Tuesday, Thursday, and Friday.

Kannie, we were writing at the same time lol. Can you message me plz?

Rhonda, i too use care but when i saw $1100 i thought how? I pay out 15 an hour for 4 hours. Sorry to hog this post

Reverseroles, I hired independent aides for two of the girls. I asked around to get names and the met them first. The one charges $10/hr. She come weekday mornings for one hour to get mom up and ready. The other charges $13/hr and comes weekdays for one hour at night to put in bed. The third girl is through an agency and runs $17.50/hr. She come two hours in the afternoon weekdays. I help mom in the inbetween times weekdays and the weekends. I also do her dinner and laundry. She has limited funds so this is working for us right now. Hope that helps!!

@Reverseroles - I use a web site called care.com to find care givers and drivers for my disabled son. You still have to do all the back ground checking and arranging pay, but, there are some ways to tailor your search (age, experience, elderly vs disabled, meal prep, etc.) and it is a step above simply placing a want ad in a newspaper. There is a fee but you can decide for how long you want to subscribe.

Kannie, plz tell me how you arange help like that. I pay 15 an hour and need help bad.
As far as hospice, talk to them and her doctor .They usually renew their hospice.

I am wondering if hospice kicks someone off...and then that person develops an infection that kills them because they are very old fragile, and bedbound and cannot get to a doctor if that hospice is then liable for withdrawing any kind of care?
There are many hospice companies around, maybe one will help when the other won't anymore....

You are right to be frustrated and there is no simple answer. Much depends on your family's budget and her need. Hospice typically isn't followed by any rehab since the concept is for folks who have little chance of improvement. Ask for a reassessment if her status has not changed from when hospice admitted her.
Was hospice the only care givers getting her out of bed?
I had similar situation with my mother. First, ask the hospice team for referrals for home bound care. Ask them for longer period of time due to need for change in disposition. Also, explain the complication to them of the high use of pain meds and request THEY assist you with changing that if possible. Who was her doctor before hospice? Ask them also.
I found a service through the local university hospital that just cares for these types of clients and was fortunate that I got her in.
Another option I explored was concierge health care. It is expensive tho and they do not much specialize in elder care.
You might also explore VA benefits if she or your dad served. Aid and attendance for spouses is available, but, that's mostly for some additional funds. I don't know about medical care through VA.

I'm going to jump in here and say I think it's the difference between certain hospices. My Dad in not terminal and hospice jumped in and "found" a dx for him. It is to my understanding as I've heard so many times that you really don't have to be terminal. He cannot walk or get out of bed either. They gave him a dx of dementia which he really does not have. He is 98.

Then it happened he formed a clot in his lungs and has a fib (just developed) and they changed his dx to heart condition. The nurse had mentioned that they re-evaluate and that's why they changed his dx. At the beginning though the doctor that signed the papers knew he was not terminal. However, I wouldn't be surprised if this did not happen to me either. I'm just saying what they did in the beginning for us. I hope you find a solution. I know how extremely hard this is and that is putting it lightly.