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My father is 97 and in rapidly deteriorating condition. I have been taking care of him for 10 years, but fear that he is nearing the end of his life. I have discussed the possibility of hospice care with his doctor and plan to have further discussion with him about it soon.


I believe that his doctor will certify his eligibility for hospice.


My question is now about insurance coverage.


My father has excellent health care insurance including Medicare and one of AARP's most comprehensive supplemental plans. He does not however have any prescription drug coverage. Except for prescription drugs and his premiums I don't think he has paid a penny extra out of pocket in spite of 10 years of serious and extensive health problems and too many hospitalizations to count.


Assuming his doctor certifies his need for hospice, can I expect these insurers to cover the full cost of his in-home hospice care excluding of course the cost of his medications?


Thank you in advance to anyone who can shed light on this and/or offer any tips from experience.

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When my mom went on hospice, a local hospice spokeswoman came to the house and spoke to us all. She was very kind and gave us a lot of information, such as if something bad happened to Mom we had to call hospice first before taking her to the ER--otherwise Mom would end up paying for it, or all the meds or supplies they would provide Mom, services, equipment, and such counseling, all for free to her.

My sister and I asked a lot of questions and felt so much better! If your father's doc recommends a hospice company, you'll feel so much better after talking with them. They'll let you know restrictions, benefits, and the whole process. I added their phone number to my cell phone so I could call immediately with questions or issues.
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dlpandjep Mar 2019
Excellent advice! 
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Just be knowledgeable and prepared for the actual limitations of hospice.

Many are under the assumption that hospice provides someone to be there looking after the patient throughout the day. This is not the case.

Typically, you will have a nurse that stops in once or twice a week - perhaps more when it comes to the final days. The nurse takes vitals and will provide information regarding current health levels and maybe project expectations and aprox timeline. A bath attendant will also be provide. As well, some form of non-denomination clergy - they can provide spiritual counseling or be available to just visit.

Supplies are provided free of charge - diapers, hospital bed, wheelchair and prescriptions for pain and anxiety meds.

Be sure to get all the details as you head into this leg of yours and your fathers journey.

I think hospice can can be a great help and comfort. But it sure isn’t what tv and the movies make it look like. As well - if your father does have some Cadillac insurance coverage - you might be entitled for more hands on assistance. But don’t assume.
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ThankYou1 Mar 2019
Thank you, that's a lot of helpful information.

Forgive me for posting this here, but I did not see any response link for worriedinCali's post and this question relates to that.

The someone being with my father 24/7 requirement is a tough one for me since I also take care of my mother who has dementia in the same home. I don't leave the house often, but still need to take her somewhere occasionally or step out, sometimes on a moments notice. There is no one to help me, no family. Of course I could hire someone to fill in, but I don't know how I would coordinate that with my uncertain schedule of having to go out.

Does anyone know the specific reason for the "someone has to be there 24/7" requirement? My father can get by for a few hours here and there without anyone here, so if that's the reason, it really doesn't apply to this situation although I am sure I will have to meet the requirement anyway if that's the rule.

I'm just curious if there is anything else to say about this requirement or why it exists.

Thank you to all for the great help!
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Talk to the hospice you would be using and ask them how it all works.

No, you don't need to provide a bed and food, especially if you are paying someone to come in. They are working, they should be awake and as with any job, bringing their snacks and meals.

When my sister was on hospice I bought fruit bars and granola bars for any visitors or caregivers. We ended up splitting them up with friends. No one felt very hungry dealing with the death and dying of a 52 year old.

We were never told that someone had to be present 24/7. Although there was always someone there, mostly because she became very demanding. This also meant that shifts were only 4 hours long.

You have the right to hire whatever hospice provider you want, I recommend interviewing several and take notes that you then have the person you spoke with read them and sign to make sure you aren't being promised pie in the sky.

We made a list of questions, like can she get a rotating air mattress. Can she have pain medication that is not morphine. Then wrote the answers, we didn't ask for a signature and ended up having a battle about a few things.

I would get hospice implemented as soon as possible, they will bill Medicare and be paid directly from Medicare for all of your dads supplies.

The thing with hospice is, you stop doing any life saving measures, no do tors, no hospitals just hospice and their team.

I am sorry that you are going through this, it is a trying time. Hugs!
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ThankYou1 Mar 2019
Thank you this is a very helpful answer. There seems to be some conflicting answers on some points such as having someone available 24/7 and what insurance is primary, but maybe that's because there are different rules in different states and or with different providers.

But your point about interviewing several providers is a great one. Until I read that I didn't even think about the fact that the service is provided by a specific provider that does hospice. Makes sense.

Also like your idea about getting them to sign notes, but my one reservation is that it doesn't sound like a very good way to start a relationship. Might have to think about that one. Might be willing to live with some disagreements later for the sake of getting off to a more amicable start.

Not sure where we are going yet. May or may not be time for hospice. Dad is still functional at almost 98, still mentally intact. Still able to navigate the stairs. But not eating enough to sustain him and a multitude of serious problems from inoperable cancer (on top of his heart failure). He is one tough former WWII Navy man, I can tell you that. What he has been through in the past 10 years would have killed me 20 times over.

I'm used to a challenge, my whole career involved pretty substantial challenges. What I'm not used to is failing to meet those challenges. I've had a good measure of success in my career. It's hard for me to wrap my mind around the fact that no matter how well I do, eventually this will not end well. That may be the hardest part for me. It's something I have no experience with and frightening to me.

I am taking care of my mother with dementia as well. Both are deteriorating at an accelerating rate.

I've found doctors to be of limited help. It's understandable. There really isn't anything else they can do and medicine has changed so much that it no longer gives them the luxury of much time to deal with their patients. So I'm on my own without a handbook. It's a wild ride, confusing, scary, lonesome and emotionally draining. I never realized how bad it would get when I signed up for the job.

But I'm always guided by what I think is best for them, that's my north star. And I believe that will lead me to the right answers. I also know that the best I can do is all I can do. The rest is up to God.

Thank you for your help and your kind words. I wish you and yours the best.
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Thankyou1, it is really about making sure everyone is on the same page.

You may not have specific requests that matter, we did. My sister was allergic to morphine and said it would kill her, then they sent morphine and it was a fight to get her something else. That is the kind of notes and signatures I would encourage everyone to address. If they get offended that you want to make sure you understood and everyone agrees, this would be a red flag. They should want you all to feel confident and secure with their services. It is a personal thing.

Tell your dad that I say, "Thank you Sir, I live in a free country because of men like him and my deepest gratitude for his sacrifices. Hugs and love to him."

Find out what they can help you with, he has some issues that will qualify him, more than likely. It is scary, but a good hospice provider will spend the time to help you understand everything, from billing to services and everything in between.

Sounds like they might help with mom as well.

You take care of you during this time as well, it is easy to forget yourself with both parents requiring so much of you.

Come here and ask questions, vent, cry, tell jokes, whatever you need.

Hugs to you.
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Hospice agencies get a daily, fixed lump sum per patient from Medicare. The money is pooled & each agency decides what services to provide with those dollars. That’s why it’s important to interview multiple agencies.

My uncle’s agency required a hospital bed - so ask ahead, and ask for an electric one. I wanted a more deluxe wheelchair with arms that would lift up to be seated at a table. Medicare would only provide the most basic, so I self-purchased one. BTW, if a bed, wheelchair, bedside adjustable table, oxygen equipment are provided by hospice, they are Medicare approved rentals from a medical supplier. The hospice provider is using its Medicare fund to rent those items, they’re generally not yours to keep. Walkers and bedside commodes are the exception. There might be others.

My my dad had home hospice. I don’t remember they required 24/7 care - they needed someone to let them in when they arrived. I was there 24/7, so it wasn’t an issue. Hospice couldn’t accommodate a specific time they’d come each time - understandable - but the agency I went with tried for around mid-day at my request. They provided a daily home-health side, including holidays & weekends, too. The aide brought supplies and stayed for the time needed to sponge-bathe dad, wash & groom his hair, brush his hair, diaper him, etc. Not all agencies provide a dally home aide visit if necessary, so ask when interviewing. Hospice provided a once-a-week nurse visit and more frequent visits when necessary. Hospice had 24/7 on-call phone consults, too. My sister just had hospice care for her husband & they provided an iPad to do tele-medicine consults (facetime?) with the nurses & doctors 24/7. My mom’s hospice also had a stand-alone resident facility. She required 24/7 skilled nursing care & was transferred there, in a coma, from after a 4 day non-hospice, hospital stay for a massive stroke. Medicare restricts the days provided for such facility-care (my mom died after 4 days there; had she lived longer, hospice was talking about a transfer to home or nursing home. Medicare does not pay room & board in a nursing home.
My sister also chose a hospice with a skilled nursing facility if her husband needed it at the end. He didn’t, but at least it was available. My mom’s facility did have 10 beds available for 24/7 skilled care when Medicare days were exhausted - patient cost about $500 per day; average stay 2 weeks. The beds were full with end-of-life cancer patients, though.
You have the right to go off hospice and go back on if needed (sometimes patient improves or an emergency situation arises where hospital care is chosen (alert hospice to discharge patient from hospice care before arriving at hospital - Medicare won’t pay the hospital bill if hospice wasn’t notified...keep the hospice phone number with you at all times should you need to alert them). You are also allowed to switch to another hospice agency if the one you select isn’t a good fit).

As to supplies, I self-purchased in bulk the plastic disposable liners for the bedside commode. I also purchased in bulk ultra-soft, dry, disposable washcloths from an online medical supplier. Bought cleansing, wet wipes for adults at grocery store. Some use baby wipes. Also, two sets of extra long soft sheets for hospital bed. My dad used hospice 15 months, so bulk buying helped. Hospice didn’t provide those items.

Hope this helps.
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When my dad was on hospice his BCBS & Medcare paid for everything. He had a nurse that came twice a week. A home care aid that came everyday, however, he did have the best health insurance anyone can have. But like some have posted in most cases you are left to take care of your LO most of the time. But Medicare does pay hospice full care for 60 or 90 days. (I think!) If I am wrong someone will correct me. But this I do know is the supplement insurance is billed first then Medicare. So I think your LO will be ok. Just don't expect hospice to be there 24/7.
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I believe the commenter is referring to the requirement that a person receiving hospice at home cannot live alone. Though, that may have changed more recently and doesn't apply in your case anyway.

In home hospice is just visits from a nurse or aide. You're on your own to care for your dad except for a few visits a week for an hour or so (sometimes, near the end, the frequency is increased).
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I almost hate to add my "two cents” to this, because there is so much good and helpful information already posted. So I will share my experience with hospice and hopefully that will give you some peace of mind.

First, a doctor does have to place an order for hospice to evaluate the patient. Sometimes doctors will feel they should be on death's bed before acting on this, other times (like for my dad who had prostate cancer that had metastasized to his hip, kidney, and other places) the doctor sees the need early on and gets hospice involved. Hospice does reevaluate on a regular basis for Medicare requirements.

My family used hospice multiple times for my mom who had Parkinson's and was often listed as "failure to thrive." She would improve and so hospice would no longer be needed. About 2 months before her death, I begged her family physician to please order hospice to evaluate my mom. The physician didn't want to. It took a hospitalization for pneumonia to get the ER doctor to order hospice. He was very kind and helpful. I asked him to only do 3 things for my mom. Get her comfortable, get her back to her nursing care room (place she was familiar), and get hospice ordered. He did all 3. She passed about 1 week later.

There are different hospice groups & some are better to work with. Currently, I have an elderly aunt under hospice care. I did not choose the group, but most of the time they've been OK to communicate with. I'm not my aunt's POA, but my name is on her HIPPA form, so they've been willing to communicate with me. Because she is in an Assisted Living facility along with her husband, she has a number of people keeping an eye on her and hopefully providing the level of care she currently needs. She is still mobile, but has Alzheimers and that is a major part of her decline.

My dad had hospice care for more than 2 years. Like your dad, he was a strong person. Dad had taken up jogging/running in his 50's. After he had back surgery in his early 70's, he stopped running, but kept walking for miles every week. He even walked around in his house or in the care facility to keep his heart rate up and to feel stronger. Thankfully, his hospice group came to the nursing care facility where he lived. The CNA's came several times a week, if not daily M-F toward the end. His nurse (or one of the hospice nurses) came at least weekly to check on him, and were there daily when the end of life was apparent. He had a massive headache on a Thursday when I visited him and I knew this was it. He was placed in bed and the pain meds that were necessary to relieve his discomfort were initiated. He passed away early in the morning the following Tuesday. Hospice took care of all the end of life needs, they were there to "declare" his time of death and to make arrangements to have the mortuary pick up his body. Dad/Mom had already pre-arranged their burial and most of the arrangements with the mortuary. I actually met with the folks at the mortuary days before each of my parents passed to make sure every wish was in place and I'd have less to deal with once I was in a state of grief.

One of my dear friends had hospice care at home. Her friends and family stayed with her during her last months of life. I sat with her several times. I took her meals early on, but in the last days, she had no appetite. Hospice nurses, etc., did visit her and provided oxygen, etc., for her for many months (she had breast cancer that had returned and went to her lungs). I understand that she died quite peacefully with family and friends around her.

I have the assurance that both of my parents, my aunt, and my dear sweet friend, are (or will be—since my aunt is still living) in heaven. They had the hope of eternal life, and so do I (see John 3:16). This makes all the difference when faced with end of life on this earth and stepping into eternity—eternal life. I pray that you and your parents will have peace as you face these difficult days together.
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Covers in home hospice, but this amounts to a few visits a week from various professionals. Does not cover 24/7 like many believe.

We did find out, after it was too late, that if you are a vet, and in hospice, you get free stay at a private nursing home that has contract with VA.
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Isthisrealyreal Mar 2019
I don't think anyone believes hospice provides 24/7 care.
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Thankyou, I think I misread your question about an aid being there for 24 hours. I thought you meant you hiring someone to come in and if you needed to provide them with a bed and meals.

Hospice doesn't provide aids to just be there. They are all dispatched to your house for specific tasks, bathing, med checks, etc.

I am sorry if I confused you about this.

I also think you being in the house is sufficient, you don't have to sit by the patients bed 24/7. Available means just that, you can be reached in person, via phone. Many times the nurse talked to my husband about things when he wasn't at the house.

Have you talked with anyone at hospice to help you yet?
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