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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.
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.
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.
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.
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.
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.