Medicare & You: Hospice

Important information about how Medicare covers hospice and respite care.
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[@kcrahmann7539]

My father had a terminal illness that was no longer treatable. He was in the hospice care facility where he passed after a 2-1/2 week stay. Medicare denied the claim for the 2-1/2 week stay for the hospice facility. He was placed there by recommendation from his oncologist due to dad's terminal illness and not being able to care for himself. The nursing home where he was at the time was not trained or staffed to properly care for terminal end of life patients like the nursing staff at the hospice house facility was able to do so we had him transferred to the hospice facility. We had been alerted upfront by the hospice coordinator that the daily room fee which covered the nursing care & stay would not be covered under Medicare. I just don't understand Medicare's logic, they will pay the cost for hospice care if my dad had still been in his home or at another location (non-hospice facility) for just the hospice nursing care cost to come to him and make their visits or if he was admitted to a hospital as an inpatient they would pay for that stay while in the hospital but they will not cover the stay in a hospice facility with nursing staff that is trained to care for terminally ill end of life patients. Most terminal patients are not in a physical condition to be able to care for themselves and my sister and I both work so moving in with one of us wasn't an option since he could not be left alone. Even having hospice care providers come to him in the nursing facility isn't a 24/7 availability by a nurse that is skilled in treating terminally ill end of life patients. Why is it that Medicare does not cover this cost of the stay at a hospice facility for an end of life patient?

[@carolwooten3638]

Can a person in hospice care travel to another state to their other home and stay there for a few weeks? Upon my release from the hospital 2weeks ago I was suppose to see someone about hospice but I declined because I had plans to go to Florida with my husband. I have severe COPD but I said I wasn’t ready to give up yet. Once I commit myself to hospice do I have to stay in one place like home or a faculty? Please answer if you can. Thank you, Carol

[@nancymcbride6272]

Yes, you can go on vacations or places. If it is for more then a day just make arrangements with the Hospice so they can have a Hospice service set up in case you need their help while away.

[@jodicox4305]

My mom is on hospice. She doesn’t move, can’t move. Only her right arm. I have begged the CNA’s and nurses and social workers for a mattress that oscillates. They keep telling me No! We move her 24 times a day and are fighting bed sores. She has no blood flow on this low air pressure mattress there is basically a damn rubber tube.. it doesn’t work if someone can’t move. She is in tears because she is always uncomfortable. Is this the way hospice is supposed to be?!! I will pay the extra cost and I have told them so. They won’t help me! This is barbaric and I’m ready to hire a lawyer and expose the whole damn system. Someone needs to help me and my mom. All I need is a mattress that oscillates.

[@kathyfleming516]

They may require certain criteria for low air loss mattress's such as stage III or stage IV pressure ulcers, but due to her discomfort, they should cover the cost as this is "comfort care".

[@ANGEL-eh6pd]

My Mom is immobile except for her right hand too. She is in hospice care, so they cover hospital beds with good materesses. Our hospice team just put in a request for some equipment to help us move her because Mom is getting bad bed sores. We boost her 20 times a day and our backs are killing. By the time the Dr. puts in any request, my back will already be broken. We had to wait a whole month before Medicare approved her getting a hospital bed too. Medicare authorization takes forever to approve and I hate that fact,

[@jodicox4305]

I have talked to them about that and it is ridiculous.
She had to have chronic bed sores that they need to document before they will s approve a special mattress.
Which means that I would have to intentionally not move her and let her get bed sores.
Well what kind of person could bro that in the first place?
And her condition obvious.
Makes me angry.

[@robinlevac354]

This may no longer be relevant, but I can totally relate to your situation, as well as Angel's. My mom is currently in hospice too. She isn't paralyzed, but she's bedridden and has been for a year now. Prior to her moving in with me in 2018 (after nearly dying because she secretly stopped taking her lasix--but that's a story for a different day) I had no experience with Medicare. I've learned a lot since then, mostly what needs to be done to get my mom the supplies and/or equipment that she needs and the amount of aggression I need to display in order for that to happen. Once Medicare receives an order, the longest we've ever had to wait for whatever it is we need has been about four days. From the time her doctor put in the request for a hospital bed, it was delivered and set up in less than 24 hours. Same goes for her low air loss mattress, although that was ordered through hospice. My point with all this is that in my experience, Medicare has always reacted quickly to get my mom what she needs. My mom's doctor, who she had been seeing for damn near 30 years, was the one who was dragging ass and lying to me when I would call for info. The hospital bed, for example. Shortly after she moved in with me I realized she wasn't going to be able to get in and out of a regular bed, so we made an appointment to discuss this with him. I laid out the facts for him and told him we need to make this happen. He readily agreed, and we left the office feeling confident that she'd have her bed soon. Two, then three weeks go by. I haven't heard anything from her doctor and I don't see a hospital bed in my house, so I call to see what's going on. His nurse (who was very obviously the staff member who pulled the short straw and it was her job to deal with me) wasn't even aware that we had requested this, since she's the one who sends the orders for DME and nothing had been put on her desk. She said she would take care of it and call me when they get it ordered. After a couple of weeks or so I still hadn't heard from her but my mom's monthly appointment was coming up so I decided to wait and address it then. That appointment is when I learned how things are REALLY done in that office. First of all, I brought up the bed and was met with what seemed like defiance on the doctor's part. He admitted that he hadn't ordered any bed, nor was he going to. He went on to say that there are two things that are almost impossible to get Medicare to pay for: hospital beds and CPAP machines. I said "I find it hard to believe that the government doesn't want people to breathe or sleep." He rambled on for a bit and ended the appointment. We had to wait for the nurse to bring my mom's lab orders in and when she did I complained to her. What she said to me is what opened my eyes to the reality of our healthcare system. When I told her what he said about hospital beds and CPAP machines, she defended him by saying "No, it's just that it's A LOT of paperwork and Dr Stan doesn't like to do all that paperwork." To which I snapped back with "Well then maybe Dr Stan should've chosen a different fucking profession!" Not only did the doctor hear me, but I'm pretty sure the business next door did too. Regardless, he did the paperwork and the bed was delivered the next day. We've clashed a handful of times since then, but for the last two or three years our relationship has gone from "doctor/patient's daughter" to "this man is calling me to ask my opinion about my mom's diagnosis and treatment" followed by his instructions to an ER doctor who called him for some history: "Listen to the patient's daughter and she can answer any questions you might have." All the years of me literally losing my shit finally paid off. Not only does he listen and actually consult me, but he suggests that other physicians do the same. In the meantime, all it usually takes is a phone call and whatever mom needs, mom gets--quickly. I like to think this is because he finally sees me as a partner of sorts, but I'm pretty sure it's because he's scared of me. And he should be. Being a caregiver is hard enough and under no circumstance should anyone have to fight just to get the help they need in order to take care of the ones they love. I do think Medicare needs to loosen their policies a bit so that it's easier for doctors to order DME for their patients though. We need to make life easier for caregivers, not harder.

[@jerrybessetteDIY]

Maybe you need to change hospice providers. My gripe is Medicare has two separate buckets: one for the person's hospice illness, and another for whatever other medical problems the person has. At least that is how I think it's supposed to work but I am still trying to figure that out.