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Dear dab, I understand exactly how you feel. By the time I was fed up with the hospice company I chose, my mother began to decline and passed away a week ago. I had finally given up the fight to have enough diapers etc. that I'm now left with a huge box of supplies that I will donate to a not for profit hospice. Hang in there, do what is right for your Dad no matter the inconvenience. Love and hugs to you and your family. God bless.
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My dad has been on hospice for about 2 weeks, and the CNA has only changes his bed sheet 1 time ! The RN has not listened to his lungs/chest 1 time with her stethoscope...he came to hospice with congestive heart failure and had pneumonia when he was dismissed from the hospital. The RN does not a set time / schedule to come, my mother has to call to see when / if she is coming ! There are so many red flags with this company, their stock answer to my questions / concerns are " we are working on it ": .... I have appointment in the morning to transfer to another Hospice Provider..wish I had known about them 3 weeks ago ! I hate we have to get new hospital bed / medical equipment, but I don't feel like my dad is getting what he deserves. Sorry for the rant, its late and I am tired...
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That comment was not directed at you Turtledog just for anyone on here who does have unrealistic expectations from hospice. As usual it is all about the money!
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VeronicaI have a good understanding of Hospice as we are a month into the process. I never expected hospice to provide full time nurses or to take over completely as you suggested. Not sure where that comment came from. I'm tired and had a frustrating day thanks to poor communication from the hospice we're using. Just needed to vent. But thank you for your lengthy reply.
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Turtledog hard as it may seem not for profit hospices have only a certain amount of supplies that they can afford and just have to ration things like depends and gloves, they just don't have the money to buy more. Medicare pays a daily rate for each patient and the hospice has to make do with the money provided.Therefor you may be asked to buy your own. There should not be a problem with obtaining medications as long as you request them well before you run out. Many hospitals and nursing homes no longer use diapers because of the expense. Instead they use the washable chug. Either the PCP continues to order them or the hospice MD. In a small hospice the MD is often not full time so getting something in an emergency may be difficult. Medications are only provided by hospice for the condition for which the patient was admitted. For example if your loved one has end stage heart failure as the admitting diagnosis but is also diabetic hospice will not supply the drugs for the diabetes.
Many hospices simply can not afford to provide 24 hour care which is why you may only get an Aide for 2 hours 3-5 times a week. It is not the job of the on-call nurse to come out and change a bed. There has to be a primary caregiver who is capable of performing all these basic nursing tasks and the Aides will be more than willing to show you how to perform these tasks.
Hospice is not a perfect system and like other aspects of healthcare probably never will be. Don't sign up if you can't take care of your loved one adequately or when if becomes too burdensome request hospital admission. What as a consumer you may regard as poor care but consider an on-call nurse can have as many as 30 patients living miles apart so h/she will have to prioritize her visits and someone bleeding out comes before a bed that needs changing.
The State at least in NYS does do unannounced visits and goes through the charts with a fine tooth comb for any violations. They also go on visits with the nurses and observe their work and interactions with patient and family as well as assessing how well they perform their duties. If there are infractions the hospice will be put on probation while the deficits are corrected then make another visit. if things are really bad the hospice can loose their Medicare certification which usually means shutting down the whole operation.
So if you are caring for a loved one at home who will eventually need hospice it is a very good idea find some classes in basic home nursing before you take on terminal care or make other end of life arrangements.
It is very stressful taking care of a loved one especially if you are the sole caregiver even if they don't have dementia so being well prepared before the task is taken on requires very careful consideration.
Hospice exists to help take care of your loved ones, not come in with full time nurses and take over completely.
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Well this was all very helpful. I love my mother's hospice nurse, but the stress of getting supplies and just recently like pulling teeth to get a new prescription for her pain medicine have pushed me over the edge. I have to weigh the pros versus the cons. I was told today a maximum of 2 packs of diapers were all that wad allowed per week. WTH?!!!
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Thank you for all your answers. It was easy.
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I could have never moved my Partner to another bed. It was a chore to start him in the original bed. We do not have a CHOCE of hospice here where I live. There is only one. I just think when this is all over with and my mourning has settled down (NEVER), I will have a talk with them about the last night. They should have never sent a nurse who was in such a hurry to get her job done. She even told me she was sorry but she had left her dog long enough. It made me sick. I will deal with that in time. My main purpose through all the hospice was to give him his medications. Then one night I needed help and the nurse on duty was really stressed as he had to be somewhere else. I needed my love moved so that I could clean him up. He weighed 200 SOLD pounds. No fat. One night I ran out of meds and the primary nurse had forgotten to order the meds he needed. I HAD TO LEAVE HIM and go to the pharmacy to pick up the meds. My GOD, that was horrible. I needed help and the aids do not work weekends. I said WHAT? You mean to tell me that my love one has to die or be moved on YOUR TIME? They are dealing with the wrong person here. When all is done I plan to see that they change the way they do their jobs, or close and allow another one to open. If they are not doing their jobs, another Hospice needs to start up. My arms were black and blue from taking the top of the sheet and pulling him up in bed. They wanted me to use the draw sheet. Are you kidding me? The nurses aid acted like she was training a new CMA...She said ok, I am going to teach you how to do this. WHAT? Teach me...Where will you be? My mind was going blank as he was dying and she was going to teach me? If you have an option of another hospice, sit down with them and tell them what you expect With our hospice, our own private doctor was the hospice doctor. I would never fire him. But, I am going to have a talk with him about how this hospice does business.
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Call another hospice service and ask them how to do it. They will help you.
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Dear NJJo - You can revoke services or change hospice providers at any time. And if you revoke the service you are allowed to change your mind later and
have it re-ordered. It's up to you.

There should have been a REVOCATION/TRANSFER Form in the hospice packet. Medicare requires it. Each hospice provider has their own, but the information is similar. If you can't find the form in the information left with you - ask that they bring you one.

Taken from Medicare Benefit Policy Manual (CMS Pub. 100-02), Ch. 9, 20.2 -

"An individual may change the designation of the hospice they receive care from only once in each election period.

* The change of hospice is not considered a hospice revocation.
* The beneficiary must file a signed statement with the hospice they have received care from and the newly designated hospice. The statement must include:

* The name of the hospice the patient was receiving care from;
* The name of the hospice that patient plans to receive care from; and
* The date the change is effective.
* The date of transfer is billable by both the discharging agency and the admitting agency. "

Now that I've overburdened you with information -

I feel compelled to ask, however, if this is a new situation for you. Starting hospice can be very upsetting all 'round. It took me a couple of weeks to even start to get used to it. At first, I found it intrusive and scarey. If that's how you're feeling and the impetus for your question; I suggest that you give it a few more days and check in with the forum. My heart is with you.

There are caveats to transferring hospice care that you may want to consider
or look into. I'm in Calif and things may be different here than where you are.

1) If you have equipment provided to you through them, it may need to be removed and re-instated by the new provider of your choosing. It's not always transferable. This is where I found that it can get cumbersome. Don't know if it's like this in your state, but in Calif., it is difficult to transfer services. I would have had to get my poor mom out of her bed (unable to walk) prop her up in a chair somewhere, while they removed the bed only to bring another one back? I called around to verify this and found that not all hospice providers share DME vendors - so I couldn't get it transferred with a few phone calls.

2) When you transfer services, you are essentially removing their doctor as the Ordering physician for DME etc. so I needed another doctor to Order the medical equipment, either a personal physician (if hospice is revoked) or the new hospice physician. Good luck and take care.






There was a great deal of information provided to me upon acceptance of hospice care. The packet, along with the whole situation was a bit overwhelming.
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I will if your not happy, report them. Oregongirl when things settled down for you, you should have reported them to the state.

I did, and the state when onsite and did an unannounced visit, it took a few months, but I got letter stating that violations were found in rules and procedures. I felt I had to do it for other families.

It was my first experience in dealing with hospice(my mom) and it was horrific. We were in the process of getting her transferred when she passed.

People need to speak up(I know it's hard while you going through it) but later on, for the sake of others. Bad nurses and bad care need to be reported.
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Like all businesses, if you're not satisfied, shop elsewhere. But bear in mind, the Hospice experience is short lived because it is end of life stage.
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Our hospice had all the drugs he needed. But, she kept forgetting to order them. I ended up having to go to the pharmacy to pick them up myself. I waited in line as my love lie at home alone for about 20 minutes It made me so nervous. I was very upset about that. I withheld my upset as I did not want to put that on my love. I just hated leaving him to get meds that he needed so badly. I asked the pharmacy if I could jump ahead in the line and they said no. I felt so helpless.
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But, as I said in one post I was so disappointed in Hospice the day my Partner died. I think they need training in sensitivity. My nurse acted like she had 10 minutes to get everything done. If she had somewhere to be, she should have called someone else. By the time she left and they took his body, I needed help.
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Yes, and if your parent is at home, they bring them to you. You pay for nothing. NADA
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I can't understand why diapers were a problem. Anything a patient needs is paid by Medicare once on Hospice. Diapers are covered and can be shipped to the facility from Medicare provider. Once set up, they r set up automatically for delivery by Hospice.
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We only have one source for Hospice in our small area. I was completely happy with them except at the end. The nurse must have had to be somewhere as she was rushing through everything. I could not think straight and had issues with letting a daughter and son (who never came to see their dad before he died) know he had died. I could not make the call. So, my pastor did. But, the nurse was running around like she will UP on something. It was sad to have to have this happen, when I was so completely happy with them through the process. There are not enough nurses in our Hospice and they are totally overworked. But, the end process should be as peaceful as my home was for the last two weeks. If my Love could have seen her running around and nervous about getting things done, he would have woke up and told her to SLOW DOWN What a shame
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I am not going to get into the nitty gritty of quality of hospice care because there are so many variations and reasons for level of care.
If there is another hospice in the area where your loved one lives simply contact the provider you would prefer and the new hospice will make the transfer arrangements.. Just do it the same way as you may change Drs.
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When my mom was in hospice, i told the social worker I wasn't happy with the hospice provicer. She immediately got me someone else, who was excellent.
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So is there an issue with current provider?
Hospice is a Medicare benefit & as such it is a "self directed" benefit, which means the Medicare recipient can choose the provider. Hospice should be like selecting a new MD, in that if the hospice group is taking new patients you should be able to choose them to provide the service (hospice care) that is a Medicare benefit. Now both their MD and the MD of the hospice group need to come to agreement that the individual needs & qualifies for hospice. There is a whole set of criteria for hospice too and they get recertified every 60/90 days.

BUT what seems to happen is that mom/dad is in a NH and something happens (a fall, stroke) that takes them from being a standard NH resident to one now qualifying for hospice care within the NH - a fall & hip shatter is what happened for us with my mom. Or something happens that is more profound - like massive stroke or severe sepsis that more likely requires an in-unit hospice ( stroke for my aunt & sepsis for my MIL). Its a crisis situation & Family gets presented with 1 choice and there is no choosing.

For us, the "chosen" hospice group had the old head of SW at the NH as an employee & he really worked staff for referrals. They had like 75% of hospice. Problem was this hospice group promised all sorts of contact & updating with family, lots of individualized care and there was zero follow through. Their philosophy was more that probability was that patient would be dead in 6 / 8 weeks so why bother. I spoke with the administration (new) of the NH at 4 weeks and I could tell that she had heard this concern before. She gave me the contact info of the other hospice groups that currently had patients @ NH. Spoke with some (& off the record got the down low on them from activities gal) selected 1 and 2 days later met with hopsice at the NH, they visited mom to evaluate her, I as her DPOA & MPOA signed mom to their group and emailed that fact to old hospice & faxed notice too. Switch took 3 days. Old hopsice implied that a switch could notnhappen too......not true so dont let them buffalo you on this. New hospice brought in their bed which was a newer model and their specialized mattress (also a newer model), a Geri chair and a geribath chair (old hospice did no Geri chairs). Over time lots of other things too, like getting mom cases of TwinCal, plastic feeding bibs, a foot weight to keep mom from being able to easily get out of bed (mom due to Dementia could not understand she could not walk), etc. Hospice posted a dry erase board with cell # of the 5 person team for my mom too - just a totally different approach to care. Mom was on hospice 18 mos too. Hospice is a godsend of a benefit with the right provider. Medicare paid hospice about $ 4,500 a mo for care too. Those are your tax $$, so if your not pleased with level of care, change hospice providers.

Now for my MIL, she was in-unit facility type of hospice & discharged to it from a hospitalization from sepsis. Most there were final stages of life from a cancer and so many younger. Mil being septic & with organ failure imminent, well it made sense for in unit hospice rather than going back in her shared room at the NH. She died within 3 weeks. As far a "choice" there was only 1 in-unit hospice provider in her city, so no true choosing. For my aunt & my mom, there were choices as they lived in a big city. Vitas has a in-unit facility & they also provided hospice care at my aunts continuing care facility so a system was already in place to get aunt on vitas.

I'd suggest you think about just what level of care your family member needs and speak with the potential new hospice providers as to what they routinely provide. The larger hospice groups - Vitas, compassus - can quickly and easily get equipment delivered, set up and working. Smaller hospice can't. If parent needs serious pain meds, well not all hospice groups have staff who routinely carry class 1or 2 narcotics. Smaller hospice just don't have the depth of staff that the bigger companies do. What fits best depends on what type of care needed.
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Hospice is a business and if you're not satisfied, find a new company and tell your other hospice that you've decided to switch. Some hospitals have beautiful hospice suites, if my mother wasn't in such a beautiful assisted living, I would have considered it, because I needed more help than hospice had to offer.
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We had to change my father's hospice provider when we became dissatisfied with the way the first provider was taking care of Dad. We had been documenting some things that we felt were inadequate with the first hospice provider such as inadequate bathing, inconsistent visits, failure to bring care supplies like diapers, etc., while Dad was being cared for by the hospice in the nursing home.

We interviewed with another hospice that was recommended by a member of the nursing home staff. We then just told the first hospice care business that we weren't happy with their service and why and that we were switching providers. That's all there was to it. The new hospice providers started immediately and they provided care for my father until his death September 12, 2012.
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