Hospice doctor refuses to allow my husband in a facility unless chemically induced at all times. Advice?

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My husband is only 57 and in final stages of LBD. Qualified for Hospice. He needs someone with him on a one-to-one at all times. I am lost. If he comes home will need 24 hour care. No one wants to help for entire time unless payment is out of pocket. I don't want to put in a nursing home because the more meds he is on the more he will be agitated. Please, I have reached out to everyone. All door have been closed in my face. No one helps. Please advise.

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When I re-read this I realized I had never heard of a hospice facility "requiring" a chemical coma for a patient unless they are in severe pain. Check with other facilities or home care.
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If you end up bringing him home and can't afford 24 hour coverage, at least get a shift daily and some extra respite days, as much as you can afford. If you can't manage him at all on your own though, you will probably not be able to bring him home, as much as you really wish you could. Where I live there was a residential hospice-based program that cost a little less than the usual skilled nursing and we would have used it as long as my mom lived. I did not have as much input or just an open discussion to meds management as I would have liked, but you absolutely should have a chance to sit down with them, whether care will be facility or home-based, and talk about your goals and what is realistic to make his last days as good as possible. Sorry you are going through this!
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If one is eligible for hospice, then there are non-profits who can visit him. He is going to die, that's what being on hospice means. Why does he need 24 hr. care? If he is in pain, he can have an i.v. pain pump inserted and you can administer it as he won't remember. Prepare yourself for the inevitable.
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@eldercarewiz. Hi. What I meant was not that the patient would be discharged from hospice (you are correct the initial certification for terminailty is for six months with actual certification periods of 90/90 then 60 days after that) but from a *hospice care facility* and by that I meant an exclusive free standing hospice where a patient is sent for *general inpatient level of care* which is time limited to address acute symptoms (which as i'm sure you know a Medicare designation and out of the State's oversight). Sorry that wasn't clear. There are so many contingencies to consider, but if the hospice has a contract with (for example) a skilled facility or nursing home for this type of bed, the same rules would apply. Custodial care is 100% the family's responsibility.

We need to know why the doctor wants the patient sedated. If it is terminal agitation that can be aggressively pursued and it may take a few trials to get it right as patients vary in response. If it is an artifact of the diagnosis where a patient is hitting out at staff or something like that, this might be considered chemical restraint for safety and if properly done can be handled at home but it would be hell on an individual caregiver without help. I've seen a few exceptions but not many. I'm not sure what the others mean by "chemical inducement" unless they are mixing it up with the oft heard phrase chemically induced coma (usually related to trauma), it is not a hospice term.

I hope Dennie speaks with a hospice social worker to help get a better understanding.

If I made this even more confusing, feel free to ask again!
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Talk with the Hospice Doctor and get him to explain why he feels your husband needs to be chemically induced. I am a retired Hospice Chaplain and I remember that the reason for a person being chemically induced is because the suffering level on the patient is so profound that being chemically induced is actually an act of mercy. It is extreme pain control when nothing else works. Your husband's agitation could be related to deep, untouchable pain and suffering.

I am so sorry you are having to go through this, but the reality is that your husband is dying and this form of pain control would give your husband relief in a way that conventional pain control can't. I understand how painful this is for you and chemical inducement can be a form of "pre-death," but it would be so much more painful to be around your husband while he is agitated and suffering so much. We don't do that to the animals we love--we don't allow them to suffer inhumanely.

I am disabled with severe Fibromyalgia and I had an accute flare-up of nerve pain that my pain medicine could not touch, where I was suffering so deeply all I could do was rock uncontollably from side to side and moan---for 36 hours. When the pain finally broke, my husband was exhausted from the helplessness and despair he felt while watching me go through what I went through. Imagine having to go through that hour after hour, for days on end with your husband. Not only would you have to deal with your own suffering, think of the depth of his physical suffering.

However, you will not know the why for chemical inducement unless you talk with the hospice physician. Also, unless things have changed, you can request to stay with your husband's doctor instead of going with the hospice physician--even while he is on Hospice care. Please know that you are in my thoughts and I am sending you and your husband love, light, healing energy and prayers for strength and comfort. Hospice will have a Chaplain, ask to meet with them---they really will be able to help because they are trained to listen and be there to support you.
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@LCSW4Hospice - what state are you in? Unless things have drastically changed my experience in MA has been that once a doctor has certified someone is hospice eligible and has less than 6 months to live - they can be re-certified as long as the same criteria are present. Dementia & Alzheimers are terminal diagnoses - I have seen that sometimes patients improve and "graduate" from hospice which is usually due to the improved pain management & care given by the weekly hospice nurse visits & HHA able to take time for just them and not multiple residents in the facility.

I would also like more info on what it means to be "chemically induced" - I have heard of people on hospice can go under 'respite sedation' to break the cycle of pain & agitation. The plan is not to keep them snowed after that but a medical intervention for specific outcomes & the patient should be more alert after receiving treatment. Anyone with dementia will have a tough time adjusting to a new environment - that's a given but should be prepared for. What does the facility do if someone is agitated & doesn't want to stay at first? Find out - I have heard not great stories of staff telling family just to leave without saying goodbye.

Sounds like a lot of fear here of the unknown - take the time to really understand what you are signing up for & what the care plan will be. Some facilities have better relationships with hospice than others and there are free standing (few unfortunately) hospice homes as well.

The fact is that most people spend less than 2 weeks on average on hospice - we need to change that and help folks along the emotional continuum so they feel like they are "playing God". When we make decisions based on comfort - the lens gets real clear.

Good luck to you :-)
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I'm sorry for your situation but in fact you have been given help and solutions. Unfortunately, you aren't ready to *hear* or *accept* them. If you reject them, then it is up to you to find a different answer. Some of the above comments explain nicely why medication is being offered. Staff at a facility cannot attend to one patient 24/7. Also be prepared if your husband is not actively moving toward dying he would only be in a *hospice facility* long enough to stabilize his agitation then he would be discharged anyway as the *medical necessity* criteria wold no longer apply as that problem would be solved. That is Medicare rules (his age doesn't matter). Best of luck.
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Where is he now?
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What is the doctor insisting on in order to admit him to a hospice facility? (I don't know what chemically induced means.)

Is your husband agitated most of the night? Usually by the time they are on hospice dementia patients sleep a good deal of the day and night. Could you sleep when he sleeps? I know that is not a sound and refreshing kind of sleep but for a relatively short period it can be done. We moved furniture and managed to fit the hospital bed in. I slept 4 feet away from him. I also had help coming in, but since he slept so much she had little to do while he was on hospice (5 weeks).

Does your husband take anything for the agitation? Mine (also LBD) took seroquel. He used it for the entire 10 years. Hospice discontinued it, but quickly added it back in when it became apparent it was necessary for this comfort.

My heart goes out to you. All dementia is cruel but it seems especially brutal when it strikes so early.
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I am experiencing this very same predicament with my 89 year old mother-in-law. Her personal funds are limited for the private care assisted living homes and they continue to insist she needs one on one attention. I don't believe that type of care is available for anyone whose funds are limited. And that type of care is almost impossible from the family side unless you have 100% participation which is also impossible for those of us who have to work or do not have family who are willing to engage. I continue to say this but...the USA Gov't. needs to step up for MENTAL ILLNESS in this country not only for the elderly but for the care-givers. The best care is only provided for those that have the assets...MONEY. Mental illness is the most ignored and neglected true illness out there. Mental Illness is the foundational motive/platform for many of the serious gun involved crimes being committed, drug addiction, and suicide. Our elderly citizens with Alzheimer's /dementia are being neglected and thrown away...there is no place to turn and unless you have big dollars, your choices and alternatives are plagued with unending forms, appointments, dead-end , outdated and rigid rules. Please challenge your state, local and above representatives and VOTE with respect to these issues. You never hear MENTAL ILLNESS issues being discussed in candidate debates. Good Luck everyone with your daily challenges in respectfully caring for your family members and loved ones.
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