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I know what it means when they say a patient is going to be admitted to hospice & sometimes they get a little better & can be discharged but why does it happen repeatedly??


I'm wondering if the initial diagnosis is wrong (meaning the person isn’t as near death as they say) & they are misdiagnosing them by putting them in hospice when they’re not that sick..


It's nerve-racking to get this diagnosis just once, but to have to deal with it repeatedly is very bad also.

I have also heard that some people get better care on Hospice and start to show signs of improvement. A friend was back and forth between hospital and rehab and was finally sent to a hospice house. While there, she was allowed all guests and people knew where to find her. As a total extrovert, she thrived on having so many guests, plus the added attention.

Though she was incurable and the facility also focused on palliative care, she improved so much that they released her and she went home. A week later, they thought they should re-admit her, but she chose not to move again and died soon after.
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Reply to Joanies
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People do go in and out of hospice because sometimes their depression leads them to be less supportive of their own care and then they’d get out of their depression and they do better. In the state of California if you’re under hospice you get financial benefits to where they will pay for some things for you so in that sense it’s good. usually yhey can stay on their meds too. It used to freak me out too but being in the business long enough now, I know it’s more common thsn one thinks. Doesn’t always mean the end is that eminent. But it can. Ugh. I’m sorry I don’t think that was very helpful but I tried!
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Reply to Lizhappens
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Ive dealt with hospice services with several relatives. What they've told me is a patient can go in and out of hospice as many times as needed, or stay as long as needed, as long as the expected prognosis is probable death in 6 months or less. But, as others have stated in this forum, we do not know the exact time of death, it is an impossible thing to predicate. Hospice is there to provide comfort and dignity to patients during end of life. And they will provide services as long as someone is experiencing end of life symptoms, certified by a doctor.
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Reply to ClickChick
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So true !
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Reply to Abrackeen
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Yes, it's a rollercoaster...

In old age, it goes like that, too. Never know when someone is getting close to dying or not.
And depends what state you're in regarding the hospice.

My mom had over 20 near-death experiences before she actually died. She was on *in-home* hospice for over a year and a half.
She always looked normal and could walk/talk, so people didn't understand...
She was evaluated at every 6 months to continue or not. There was a little weight loss each time, and the "episodes" continued, so they kept her on...
If you are taking her to a hospice facility, then that may be a totally different story...
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Reply to Savitaa
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There is a BIG difference between HOME hospice and IPU hospice(In Patient Hospital Hospice)...my dad was in the hospital last summer when he came down with MRSA/Sepsis and it went to heart ie Endocarditis.....he ended up getting hospital delirium......was suppose to go for 8 weeks of IV antibiotics for a possible cure of his Endocarditis but he stopped eating/drinking - they said he was dying - I think it was because he was just not hungry due to illness...anyway, rather than put a feeding tube in him, I chose hospice - on Day 1 they started morphine, Haldol and Ativan and he quickly became unarousable and died on Day 3 since they doubled + the doses of these meds....they also stopped his life saving antibiotics....so not sure if he died from not having antibiotics OR from being overdosed - I think its the latter. Im guilt ridden and heartbroken since I never knew hospice went all out like they did with the meds.....and didn't realize that the antibiotics would stop.
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Reply to Mhillwt
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SeniorCareAdvsr Apr 11, 2019
That sounds horrifying. Every Hospice is similar and every Hospice is different... different companies, different people making decisions. I would encourage you to obtain his Medical Records, talk to the doctor that actually ordered those medications (ex: Haldol is typically only used for persons with extremely difficult to manage behaviors), and go see a medical review attorney. What you experienced does NOT sound like true Hospice at all... more like the hospital simply moved him to a Palliative room. It would be accurate that most hospitals do not have the correct dosing and medication management techniques needed for compassionate care. There are many reasons why the doctor would have ordered the antibiotics be stopped, so ask him/her.
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As long as there is a "documented decline" a person will be recertified for Hospice.
If there is no decline then they can not be recertified.
This is why as a family member and a caregiver you should document all changes you see or are told about.
The person used to be able to talk in sentences...now it is a few words.
The person used to be able to be understood when talking ...now it is mumbles or now it is just sounds.
Weight loss. You do not need a scale for this, clothes fit looser, the belt has moved a notch or two.
On the other end, Weight gain if it is due to fluid retention or other medical conditions related or unrelated to the diagnosis.
Not being able to stand on their own when they used to be able to stand
Sleeping more, used to sleep 9 hours but now takes a 3 hour nap mid day and still sleeps 9 hours at night.
Choking or coughing when drinking. Or used to thicken drinks to "nectar" thickness now have to thicken to "honey" thickness.
Any little change you see should be documented and told to the Hospice nurse when she or he comes to do the recertification.
They want to keep someone on Hospice they do not look for ways to discharge someone so every bit helps.
And you are right it can, it is frustrating to be discharged from Hospice. You get used to the help, the education, the support and it is hard to do this alone. So if your loved one is discharged as soon as it is possible to get them back on Hospice make the call...again.
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Reply to Grandma1954
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They get evaluated in three-months' time and every 2 months afterward. Sometimes people improve and do not show decline, so they are not put back on. When they decline they can be put back on it.
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Reply to cetude
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Is it you who is going in and out of hospice or a loved one?
I can't tell by your question. I guess it would be scary either way if no one has spoken with you about what is happening.
Are you or LO being admitted for the same illness both times?
The way I understand it is that just because someone is allowed hospice doesn't mean the you have to die in six months and just because you get discharged doesn't mean you're cured.
I think it's great that you are reaching out but it seems like you really need to ask your doctor's more questions. You shouldn't have to be so scared or confused especially after the second time.
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Reply to SparkyY
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I have done the bounce with 2 LOs. The one had been getting blood transfusions every month before using a med to spawn new blood cells, Hospice improved his life he lived 2 years instead of 2 months. We got hospice the second time, he died in 6 hours. Other was on hospice twice, ALZ, gained weight each time. She is now in a LTC facility. I now have a 3rd LO on hospice, CHF. The defibrillator was repeatedly firing for true lethal rhythms. It was deactivated after 3 shocks within an hour. Medication was used to convert a normal heart beat. He was put on new meds and put on hospice. Doctor said it could be days or months. 2 months out he is doing so well (probably the new medication , talks of discharge are happening. These were all hospice cases that had less than 6 months diagnosis. Hospice does have supportive care and palliative care programs, also.
As another noted, don’t get caught up on it being the end, but the quality of life and family support, and comfort.
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Reply to fantasmagorical
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Hospice is mainly for Terminally Ill...Six Months Max from what I Learned....
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Reply to Parise
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cetude Apr 11, 2019
No they have to show decline. My mom has been on hospice for 10 months now but is showing decline due to end-stage Alzheimer's disease. They evaluate in three months, and every 2 months afterward.
(1)
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The name of the Hospice that helps my wife is ******* Hospice and Palliative Care.

This is part of the definition:

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

So Hospice services are no longer just end of life but can be used almost indefinitely.
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Reply to garylee
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cetude Apr 11, 2019
This is NOT true. You really have it wrong. They have to show decline. They will NOT keep a patient on hospice as a home health measure without decline, and it is with the understanding they are beyond medical cure. They are evaluated in three months initially and every 2 months afterward. A doctor or nurse practitioner has to see the patient every 2 months.
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I am currently helping with a woman who has home hospice care. She is in a very rural area. Before she had hospice care she was alone all day until her 53 yr. old son came home from work. She was at end stage COPD, and completely emaciated when she was admitted to hospice. No- one thought she would live longer than a month, but now 5 months later, she is still going. I have cut back my hours, but I was working with her around 35 hours a week. I think having a compassionate person there with her has made a huge difference. The hospice team is so kind, and she receives excellent comfort care. She may or may not bounce after 6 months, but she can be re-assigned. The main thing I have learned from this is that no-one truly knows when the end is, and it's best to stay in the present and try to enjoy every precious moment. Hospice is a gift, and people should take advantage of it for as long as possible.
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Reply to Lokken
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In order to be admitted as a hospice patient, you must show clear signs of being six months or fewer from death. Medical professionals do not take this lightly; hospice services are already over-scheduled. Modern medicine is based on science and numbers, but it is also a guessing game. At the end of the day, every person’s health and ability to survive under adverse circumstances is different.

I have personally experienced the “hospice bounce” with a loved one and was so grateful for that glorious, precious extra time. My loved one wanted very much to survive, she had a very strong will to live and was defying science.

Now that she is gone, I look at those days with great appreciation.

I know now that it is a scary time and wish you the best. You will feel somewhat deserted. Your true friends and reliable family members will see you through this storm and you will survive.
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Reply to ACaringDaughter
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Hospice is no longer for end of life only. Some patients do recover and don't need their services. In the case of my 97 year old mother who lives in ALF, she was put on Hospice because of Stage 4 heart and kidney failure. She's not going to get better, but for now she is definitely not bedridden or in pain. Hospice regulates her medications and does what they can to make her life pleasant and comfortable. Hope this helps.
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Reply to sudalu
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Happened to my brother once. He was released from hospice. Went in fairly soon afterwards and did die. I guess so they can enjoy the little time that is left. I’m not sure. Others may have better understanding of this.
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Reply to NeedHelpWithMom
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Did getting hospice actually help you or your LO? Is it possible that they tried to help you both by giving you a bit of support, even if they knew that it wasn't really justified? If that's a possibility, just try not to treat hospice as a 'death sentence' that upsets you.
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Reply to MargaretMcKen
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