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Do not ever use hospice for yourself or your loved one unless you have two weeks of life remaining. My reasons are as follows: All hospice agencies employ a medical director to over see the patients who are under their hospice care. Many of the patients are referred to hospice by that same medical director, who is a doctor. Therefore the doctors income is paid by the hospice agency. Usually, the medical director meets with the hospice staff (nurses, chaplains, social workers, designated hospice administrators) to discuss how the patient is doing. Rarely and hardly never does the medical director go to the home, skilled nursing facility or where the patient lives. Most communication to the doctor comes from the nurse. The doctor usually supplements his income as a medical director. In addition, all hospice agencies hire recruiters or liasons. These recruiters and liasons jobs are to go out to hospitals, skilled nursing facilities, doctors office and beg for patients. Sometimes recruiters and liasons will lie to you about what you will receive from hospice. Their job is tp get you to sign the paper work and increase their volume of patients. You are just a number! They may be nice and kind, smiling about it. But, their objective, as I said, is to get you to sign the paper work. Some agencies require recruiters and liasons to meet a quota. As a patient of a hospice company, you are assigned a registered nurse, home health person who gives the patient a bath, a social worker, a chaplain and some hospice agencies have music therapy and pet therapy. All of these disciplines are nice to you, of course. Bathe you into oblivion. Some people have never been treated so nice and taken care of so well. Makes you think hospice is good for you. One of the caviats with all hospice agencies is the discontinuance of some medications. Due to the fact that if the disease they diagnose you with is to run it's full course, the person would die within six months or less. That is the criteria which must be met. Therefore, medicare nor medi-cal will pay for medications that are curative when you are diagnosed terminal. Only curative medications will hospice pay for are those that would cause a severe medical reaction, such as a heart attack, if not taken. If you want to continue on the medications hospice discontinued, you would have to pay for them. And NEVER let hospice give you morphine, especially every two to four hours. You will be dead in two days. Another observation I have witnessed, hospice does not want you to go to the hospital. If you go to the hospital and you are admitted, then hospice has to revoke you from their care otherwise, either your or hospice will receive a medical bill. Many hospice agencies will not treat urinary tract infections. That means getting lab work ( which hospice has to pay for), prescribing antibiotics (which hospice has to pay for). Hospice does not want to put out any more money than they have to. I know one gentleman whom hospice did not want to go to the hospital, he went anyway. The hospice nurse misdiagnosed his symptoms, saying it was part of his terminal illness. It was not! He was diagnosed at the hospital with meningitis at the hospital. He was treated at the hospital. Imagine having burning sensation when you urinate, and hospice wont treat it. You have to push, push, and push to get diagnostic testing. It is my belief that many hospice patients died, not due to their hospice diagnosis, but due to a medical condition that was probably nicely explained as part of the patients hospice diagnosis, when it was not! The nurses and administration are so nice about explaining symptoms away, many people believe it and don't' go to the hospital. The only way I would get on hospice is if I had days to weeks left. There are only three hospices I would choose. I have chosen these three hospices because they have been around for years. They have a large census,

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The history of hospice is quite fascinating. What it is NOW I can't tell you, because I am out of nursing for more than 15 years. When it first began it was a dedication to making end of life decent for people and was a model brought to us if I am not mistaken from the UK. It was wonderful. My friend left hospital nursing to work in hospice right away and worked her way up in it. Over the years it has changed remarkably as far as we can see. I will only say one thing. Follow the money. It has become about that. A part of the Military Industrial Complex where once it was an absolute mission of mercy. It has been sad for me to see the few changes I am aware of.
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This representation is not true of everyone who has ever been in hospice. Both my MIL and stepmother were in hospice...of their own request and choosing. My SM lived on hospice for 9 months. She was already living a miserable existence with zero quality of life (2 catastrophic strokes, bedridden, incontinent, no use of hands, no speech, limited vision). She refused IV hydration, feeding tubes, medications to prolong life like bp meds and antibiotics. My MIL was literally dying fast from aggressive and painful stage 4 colorectal cancer. Antibiotics for a UTI wasn’t going to save her and she didn’t want to live any longer in her state. She also refused all diagnostics that docs and nurses begged her to do because (in her own words) “I already know I’m dying, I know it’s the cancer, what the hell are you wanting to look for?” Hospice was awesome for those two. It was self-directed, family support, and provided great comfort for these two women who were ready to let nature do its thing.

So for those two people.....how exactly were they scammed when they were the ones to actually direct their end of life? Or are you just wanting to speak on those who were put there by others? If one does not want hospice for themselves at the end of their life, for whatever reason they have, all they have to do is draw up an advanced directive. Legal document. Done. No family or doctor or administration can go against it without legal repercussions. Same with wills, POAs, and DNRs. If one does not do this, then what happens after they are incapacitated is out of their hands.
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AlvaDeer Sep 2019
So glad to hear this.
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Your representation is all wrong. Sounds like you had no idea what hospice was. It IS end of life care. Yes they do discontinue certain meds and they don’t do anything to prolong life. It’s far from a scam.
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The 7 weeks that hospice cared for my sister has convinced me that they provide a vital service.

It is unfortunate that people are not fully educated about the role that hospice plays, people are counseled to use them as a way to care for seniors that are no longer ambulatory and have a difficult time getting to doctors visits or testing. Not just end of life comfort care.

It is a gift when it is used for its it's intended purpose, it is not a scam. We knew exactly what to expect and what they provided. If they didn't meet their obligations, they got called to task.

Please don't try to scare people away from the one service that can ease the dying of a loved one.
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I don't usually criticize someone's post, but you should be aware of the statements you've made that aren't verifiable.

"All hospice agencies" - you've contacted all, i.e., every single hospice, in where?  Your city, county, state, the US?    Overly broad generalizations don't stand up to scrutiny. 

I'm also not clear whether you mean a hospice, or some other form of hospice beyond the actual facility.  I'm not really clear on what a "hospice agency" is.

"Rarely and hardly never does the medical director go to the home."   Not true in our situation.    Again, how do you do what the procedures allegedly are in so many facilities?  Have you contacted all of them as well as "all hospice agencies"?

"One of the caviats with all hospice agencies is the discontinuance of some medications. "   Another false statement; totally untrue in our situation.  

"And NEVER let hospice give you morphine, especially every two to four hours. You will be dead in two days. "   Baloney.   Totally untrue in two situations in which I've used hospice.

I raise these points b/c the adamant hostility you express as well as unfounded accusations completely undervalue and undercut the validity of your complaints.  

You don't indicate who was on hospice.  I'm sorry for the bad experience you have, but it's totally unrealistic if not patently false to extend these experiences to "all" hospices.
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AlvaDeer Sep 2019
It is the MOPHINE I want to go to it for!!!! My doc and I have a running joke. There are many tests I have refused since age 70. I always say I am going to go of something. Just as soon as we know what that is I want hospice and give me the GOOD DRUGS. The whole idea is, yes, putting it bluntly to be ushered out with as much decency and dignity as can be preserved and with as little pain and the other dreadful things that go along with death, difficulty clearing airways, breath hunger, and so on. The best hospices will explain to the families at some point that if enough medication is given to put a patient at rest and below the level of dreaming, and picking at things, etc. it could well hasten death. I certainly have never been aware of a family fully informed in these last days who has wished their loved person to suffer instead.
I still maintain that hospice used to be better. So many more people at the bedside, helping with families especially psychologically. It has become more a matter now of you get this many hours RN , this many CNA, this many for this and for that. Kind of down to a formula. The best hospices I knew in the beginning of it were also hospice facilities. Man were some of them amazing, and I think so few left, at least in my area. Know of one in North Beach area, but so few beds.
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Although you have some facts right that Drs do supplement their income by being Medical Directors; however, they are providing a valuable service! Hospice is for the end of life care and insurance will not pay for hospice if the pt goes to the hospital; therefore, hospice has no choice but to remove the pt from their services if the pt gets admit into the hospital. To qualify for hospice the pt must have less than 6 months to live, however, dying does not happens on a time clock so they may extend the hospice care longer.

My dad was on hospice and they made sure he passed with no pain and I for one thank God for them!!
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Wow! What a scathing review of Hospice. As others have stated, I believe you do not fully understand how Hospice works. Hospital treatment is usually done with a cure in mind, and if a person is no longer seeking a cure, the hospital is irrelevant. I would expect Hospice to treat a urinary infection since that would be part of "comfort" care.
Morphine is usually only given in the final days of a person's life to make a person more comfortable. They were only going to live another day or two anyway. The morphine did not kill them, it made them more comfortable.
I'm sorry you did not have a good experience, but it sounds like you are confused about many aspects of Hospice.
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My mom was on hospice and they billed nearly $5000.00 a month. She maybe would let them shower her once a month. I felt they were there for making money and pushing her to a facility, which she would’t do. I’m sure there are great ones, but feels like making money more than anything.
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Midkid58 Sep 2019
My FIL and daddy were both on hospice care and it was not $5K a month. I think mother paid for the drugs and the visits from the Hospice company, but there's no way it came to $5,000 a month. Sounds like your mom was in a NH and not being cared for very well.
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I did not have that experience when we had hospice for my dad last year. I will say, as in all human systems, there were people within the hospice system that were good, and some not as good, but overall they were very helpful.

I think your issue is with the particular people you dealt with, that does not characterize hospice as a whole.

As for not going to the hospital, yes, that is the deal when you sign up. You are not under a plan to keep your LO comfortable, be it at home, an SNF or whatever, but you are no longer trying to improve or get cured.
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I had a wonderful experience with Hospice from beginning to end, and they not only helped my dear dad pass in comfort vs. excruciating pain but they helped ME and my family cope with the loss and his last days. I've never seen or heard such a bunch of baloney about Hospice until I came to this website and started reading 'reviews' about the service! Don't sign up for something you don't understand or have no knowledge of. Hospice doesn't 'kill' people nor do they 'speed up death'. They make people COMFORTABLE in their last dying days on earth. My father was given oxygen during his time in Hospice. And, I could have taken him OFF Hospice and brought him to the hospital if I chose to prolong his life for no good reason. With an inoperable brain tumor, had I brought him to the hospital, I may have extended his life by a week....maybe......and a week of MISERY at that! He'd had multiple UTIs as well, which WERE treated, under the umbrella of 'comfort care' that Hospice provides.

However much money Hospice charged us for their service, it was well worth the price. And Medicare agreed, or they would not have paid the bill.

Phew. I wish everyone would give it a REST already with Hospice criticisms!!
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kasha1, please note that the morphine given to a love one in hospice is the same amount as given to a person who just had major surgery.

I noticed you are new to the forum. This is your first posting. Too bad you didn't find us when Hospice was recommended, we all could have walked you though how the program works, and what questions to ask.
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Search for the HOSPICE questions above.  Click on magnifying glass.
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