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My mom has been under home hospice since February 2020. It was a tough decision to make but I'm glad I did. For the most part things have been okay, weekly nurse check-ins, bed and supplies. And, mom seems to be doing much better under hospice.


With that said, I have a few questions/concerns: (1) What are the protocols for hospice recerifications in these Covid times? Just before the 1st 90 day recert, nurse commented that mom may be kicked out of hospice. I did not appreciate this and have since reached out to mom's PCP and oncologist who stated that mom would continue to be hospice eligible since she has terminal cancer. (2) Nurse deficiencies? Since we've switched to virtual visits, I've had to reach out more than once to inquire if we are having a weekly check-in. Also, as it relates to supplies, I've had to request briefs several times before they actually arrived. The excuses have been: I forgot, needs manager approval and brushed off. I recently expressed my displeasure with the nurse and haven't heard from her since.


I thought hospice was supposed to relieve frustration not add to it. Any suggestions/recommendations?

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I would contact the administrator of the hospice with a list of your concerns. I would email them as well. I would also ask why the hospice nurse is not visiting using protective personal equipment. Is it hospice policy or state policy? In my state, physicians as well as other health care professionals are reopening for in person visits using protective equipment. In terms of being discharged from hospice: a patient must be discharged from hospice care if there is no documentation of continuing decline. In other words, the patient is "stable." No new interventions. That being said should your mother's condition decline after discontinuation of services that is an indication that hospice may need to be restarted. The guidelines are dictated by Medicare not the hospice. Again I would suggest contacting the administrator.
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Reply to Peanuts56
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Thanks everyone, the responses have been helpful.

With respect to visits, my mom is doing really well so I'm okay with NOT having folks in the apartment in these Covid-19 times. Just knowing that they are a telephone call away brings me great comfort if they're needed.

As it relates to supplies, I would never let things run out even if it means coming out of pocket but if this is a benefit then the hospice staff needs to do their job to make it happen.
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Reply to Nurturbynature
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My mom graduated from hospice around 4 times. The last time,she went to Heaven.

They usually find something to keep them on hospice. If not, ask for palliative care.

If supplies are not being supplied as often, then step in, and order them and have them delivered, or take them over yourself. No reason not to. If mom wasn't on hospice you would be buying Abri-forms /diapers yourself. Better to have more supplies than not enough.
She has terminal cancer.. That is the main reason for them to keep her on Hospice. Make time for her, play music, dance. be joyful when you see her.
Hospice is not perfect.
take care.
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Reply to MAYDAY
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My mom has been on Home Hospice since a day before Christmas. You can see on line criteria for recertification by some of the diagnosis. My moms is for stroke. We had recertification at 6 months and now the next two are 13 weeks apart. Mom has dementia but this is not the Hospice diagnosis. Our nurse during phase one was required to come by in person by law every two weeks. Now we are on phase 2, she is back to every week. She told me the only virtual visits were with nursing homes because they are not allowed in. The nursing home RN gives them the information they need.
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Reply to KaleyBug
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Imho, you could speak to the hospice head, assuming there is one.
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Reply to Llamalover47
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Ok.. I am a home health aide and have worked in home care for 25+ years including a bunch of hospice. I just had ANOTHER PATIENT that was on hospice and her RN still came out EVERY WEEK... at least once... sometimes twice per week and this RN always wore a mask. To me, there is no excuse why your nurse is NOT showing up. I see this all the time while working for home healthcare agencies. This last patient--- her daughter saw our ad on TV... daughter called my agency and asked them questions. My agency then sent out someone from the office to ask her questions of what type of care her mom needed. Daughter signed her mom up right then. Now... 10 months down the road.. I have had this patient for the whole 10 months. Get this.. THE ONLY NURSE MY PATIENT EVER SAW DURING THOSE 10 MONTHS WAS THE HOSPICE NURSE. My agency NEVER sent out a nurse... never asked ME, her home health aide... anything about this patient. I was angry. You can bet that my agency made sure they got their bills sent to them..and that they got paid on time, too! In 10 months my agency NEVER checked on this woman. Well.. they had me there.... every time I was scheduled... every day I was there on time... NEVER late.. and every time my patient needed me to change my schedule, her daughter called me. She hated calling the office they are so irresponsible. I have seen nurses fill out their forms saying they have made their visits to the patients but. .they lied... they never went to see their patients. Nurses any more are garbage. I have to work with them. Used to NOT be this way but the nurses... or whatever you want to call them.... so many are garbage. They get in this profession for what reason? Money... and more money... and they lie. They don't care about their patients. I am so sorry. I don't know what to tell you. How to find a great nurse.. not sure. Except.. BEFORE YOU SIGN UP WITH ANY COMPANY.. GET IN WRITING.... can't stress this enough... GET EVERYTHING THEY TELL YOU.. PROMISE YOU... GET IT IN WRITING. Some of the things these agencies have us aides do IS AGAINST THE LAW. They tell us to sit with the client and make sure they do their medications right, help put med in those med planners correctly. THAT IS AGAINST THE LAW. Aides are NOT taught how to do that in their schooling. Aides do NOT know how to read those med bottles. like... tid... bid... qid. I know what that means because I WAS A NURSE AND WAS TAUGHT THAT, OF COURSE. How can these home healthcare agencies require aides to sit with the client and make sure the patient is doing that right in that case? Stupid... dangerous...AGAIN.. PLEASE.. MAKE SURE YOU GET WHAT THEY SAY IN WRITING. And please... call that office. Too many of these nurses... and I have had aides do this too... say "I am doing my visits" and they are not and yet filling out their forms saying they are and handing them in to the office. Unless you call the office and report them.. please report them to THE OWNER OF THE HOSPICE...not some friend of theirs in the office.... Unless you ask questions... this could go on for a very long time. Hospice care is being paid for by the government so doing this ---THIS IS FRAUD. I did turn in one hospice. Found out that out of 180+ patients my agency had as hospice patients, 42 actually qualified for hospice care. They had done this for at least 3 years. Fraud.. for at least 3 years. They had stolen millions of dollars during that time. Ask the agency how often the nurses ARE going to visit... (not may visit) get THAT in writing. Every time anyone from that hospice comes out to visit, they are to sign in the hospices book that is in EVERY HOME. Here is the rule... IF THEY DID NOT SIGN THAT BOOK, THEN THEY DID NOT MAKE THAT VISIT. This goes with what they tell the aide... " You only did the work that you have checked off or written down on that form in the home. ... When you leave something blank... that means YOU DID NOT DO IT." Many people will NOT report this stuff. It needs to be done
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Reply to DonnaF777
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I recommend switching to a different hospice. They should be providing in person visits. My dad was on hospice two weeks and the nurse came daily towards the end. There is no excuse for you having to endure this. If you want to get to the bottom of it call the Hospice Director of nursing. But personally I would switch.
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Reply to Harpcat
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we have an awesome Hospice, nurse is here weekly, aid is here on a regular basis. I was told if you have an issue with anything that I should call our hospice social worker. I am so sorry you are having issues. I would Definately call and raise a bit of hell. Our nurse checks weekly if we need supplies or meds and orders them when she is with us. Hugs
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Reply to Nanato4
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As long as your mother is not getting treatments for cancer she can remain on Hospice.
As far as supplies, do you have a CNA that is visiting mom to bathe her, dress her and check on supplies? If so that is the person you should talk to about reordering.
If you are get the brush off from the nurse I would call their office and talk to a manager.
It is odd that she is not getting nurse visits if she is at home. The Hospice I volunteer at, the nurses and CNA's are doing home visits they are doing fewer facility visits and the facilities are using their own nurses for the weekly required visit notes.
Does the Hospice you have have an APP that will allow you to relay information to the team? Ours uses TapCloud it is a secure way to communicate with the Hospice Team.
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Reply to Grandma1954
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It sounds to be like the nurse was simply explaining the admission and recert procedure for hospice and that the possibility exists that mom can lose Hospice eligibility. Which is procedure. Also re-certification is every 6 months, not 90 days. Reassessment in 90 days.

Nothing more, nothing less.

Not that your mother will lose hospice, of course, but the nurse needs to disclose all those possibilities to you. This is a difficult time for you and maybe you latched onto that specific phrase and assumed incorrectly the nurse meant hospice would be stopped. Maybe she is a new hospice nurse. Maybe she had 6 patients to see that day. Maybe she is the only nurse!

Hospice will not be stopped for your mother. It will not.

I’ve said it before- these are extraordinary times. Healthcare professionals are doing the best they can. The healthcare environment is forever changed now. Telehealth will be the norm. There will be more remote medicine going forward because this pandemic has proven it can be done and done *WELL & SAFELY*. More onus will be placed on you, the consumer, to call your insurance company to see if your test is covered, etc. In healthcare all are being made to multitask (as in other non healthcare companies as well). The “good old days” are gone and never to return.

MD’s to RN’s to CNA’s are scared of getting this virus. It’s an occupational hazard now. Many nurses have just quit and may not ever go back to direct patient care. Some PCP offices are not even open yet and doing telehealth exclusively to avoid Covid exposure. With those PCP’s those patients are sent to the ER if it cannot be handled via telehealth. The ER is not where you want to be. Many older PCP’s are retiring now as this pandemic stretched their resources and they’ve decided it’s just not worth it for the Medicare/Medicaid reimbursement rates (which keep getting lower). Not to mention the new hoops many doctors are required to jump through for authorization from insurance for reimbursement on procedures that were commonly done without extra auth.

I subscribe to Indeed.com for RN’s. Every week there are several open positions for Hospice nurses. Every week. They are *always* short staffed. I have always wanted to work in hospice but when I see those open positions so frequently I hesitate because although I would love to work there as a RN, I am not going to put myself in a position of being the only nurse having to cover RN turnover and have to take care of too many grieving families that I will not have the time to take care of properly and have those families complain when I am doing the best I can. I don’t roll that way. If I can’t care for you the way you deserve to be cared for I am out of there. So no hospice position for me unless it’s as a volunteer when I retire.

I am sorry you have to cope with this while your mother is dying. I wish the best for you.

As stated bring your concerns to the director of nursing and give them a chance to fix it.
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Reply to Shane1124
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You guys are great and I'm so glad I posted. Update: nurse nervously reached out for our weekly virtual visit. I was cordial and she continued with the excuses, but I know all along she "dropped the ball". Anyway, I clarified my exceptions of hospice and let her know that if I'm not getting the services I need then I will fuss my way up the chain and jump to another company.
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Reply to Nurturbynature
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Shane1124 Jun 26, 2020
Dropped the ball on what? Ordering supplies? What “excuses”?
Were you not trained to flush the picc? Ask her to teach you. With hubby on hospice for 18 months I am surprised at this. It’s easy to do. I had one inserted while in the hospital for a post arthroscopic shoulder repair infection. I was taught how to flush it myself as well as administer my own antibiotics via PICC, flush it and then was discharged home. I had to wait 3 days in the hospital because there was no PICC certified RN available until then to insert the line which was done at bedside. That was the extent of my training. Same with my neighbor who is receiving chemo through the picc. The staff flush the picc after chemo then the family does the flushes every day.
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Contact management at the hospice and request a different nurse. If they get ugly, fire them and hire a different hospice provider. I prefer non profits, they seem to care more.

There is no reason that they should be causing more stress.
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Reply to Isthisrealyreal
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Sadly I can relate to what you are going through with Hospice. My husband has been under Hospice care for 18 months now and early on I too had to request a change in his nurse as she just wasn't doing her job. I've also over the months had to request that a particular nurse or aide not be allowed back for various reasons. Now of course with Covid-19, my Hospice agency has discontinued the aides coming to bathe my husband, (which they normally did twice a week), which leaves me and my son to have to do it, and he can only come on Sundays, so that means my husband only gets bathed once a week.(my husband's bedridden) They also have the nurses making home visits once every 21 days, with weekly televisits the other weeks. Now because my husband is on a pain pump, they are required to come here 3 times a week to flush his Picc line, and monitor the pump. The massage therapist can no longer come, and the quarterly visits by nurse practitioner are now done on Zoom. And because most of the Hospice personnel are now working from home, I don't think the right hand knows what the left one is doing. I recently had to call 3 weeks in row to get the supplies I needed, and had to call again this morning wondering where my this weeks supplies are. My experience with Hospice has pretty much been frustrating from the start, and has only gotten worse since the Covid issue. I too thought that Hospice was supposed to relieve frustrations and not add to it, but that has not been the case for me. Unfortunately for me we only have one Hospice agency in the city where I live and the next closest is probably a good 45 minutes away and because my husband has been in the Hospice home twice already, I can't switch, as the commute back and forth would not be convenient for me, so I am stuck. But because I now have to be the mouth for both me and my husband at this time, I am very vocal with any issues that arise( and trust me there are many). I'm sure they cringe when they see it's me calling, but I don't care. My husband deserves the best possible care. And the fact that they charge insurance $6000 a month for ME to take care of my husband in our home is unbelievable. I better stop as I could go on and on. Hopefully for you and your mom things will get better. Just don't be afraid to speak up, as you now have to be the mouth for your mom. She deserves the best care possible.
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Reply to funkygrandma59
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I would call and talk to the person in charge. This nurse has a supervisor at least. Even though COVID is in the picture, nurses are essential workers. I see no reason why she can't visit once a week at least. Medicare pays for those supplies and I would assume allows them to be ordered regularly. I see no reason why a manager has to give permission. Maybe sign off? And if the nurse isn't doing her visiting then she should have more time on her hands.

It will be hard right now, but you can get another hospice in. And telling you Mom maybe discharged...these places will do anything they can within Medicare rules, to keep a client. This is how they make their money. The one who determines Moms discharge is Medicare.

You can always ask for a different nurse. She can't be the only one.
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Reply to JoAnn29
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I'm sorry for what you are going through. To add incapable nursing care along with the natural stress that is Hospice--makes it doubly hard.

I think the best thing for you is to go over the nurses head and request a new nurse to be assigned to your mom's care.

I'm not a Hospice genius, but someone with terminal cancer should be a no-brainer for continuing Hospice. That was an insensitive remark on her part--and probably caused you stress.

The NURSE does not hold the keys to continuing care, the Drs. do, so don't worry that her recommendation is the last word.

I wish you luck and peace in finding the answers. These days, everybody is so on edge--healthy or not, we're all feeling the stress of trying to get care that's appropriate for us and our LO's.
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Reply to Midkid58
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