Switching hospice provider

May flowers

DH have reached the point we have to consider a new hospice agency. We have so many issues with this agency. Meds taking a long time to get ordered, 3 weeks to get UTI and related concerns addressed, questions not responded to, phone calls ignored, repeated promises of a volunteer sitter which never happened, overworked nurses, no show CNAs for baths, a nurse that I think may have some personal issues (either with us or in general) affecting my FIL’s care, supplies not delivered or missing items, generally being kept out of the loop on some things, and more.

The only good thing I can say at this point is they provided good equipment and our case manager nurse is very good and competent. 

Considering that we will eventually need more support, I am concerned that it will just not be there. 

Anyway, what happens to the equipment if we switch - does it all get returned and new equipment issued? Any other questions or issues I should know about switching?

terei

I would call a different hospice + ask these questions.

May flowers

I plan to do that. I also appreciate feedback from anyone who has been through it, what to expect, questions to ask, etc.

Joydean

May flowers, I don’t have any answers for you but I just wanted you to know I’m thinking of you and praying for you and your family. Hope you get a much better hospice. I do know there are some really great hospice organizations. The hospice group for my sister is law was so very good and really took care of everything for my brother. I meet them several times and you couldn’t have asked for better care. Best of luck to you!

May flowers

Thank you, Joydean. That means a lot. We were struggling with what to do, and I spent hours reading posts here about hospice and our experience is definitely not the norm (based on other’s experiences) which is why we are looking to change.

The bottom line for us is we are looking for someone to come alongside all of us in this painful journey, but in many ways this agency has made us feel more on our own than we felt before.

jmlarue

Once you make the switch, I'd make inquiries on what authority provides oversight for hospice providers. If an agency is failing in their duties, they should be held accountable and given the opportunity to step up their game, fall into line, or close their doors. It really isn't right for us to suck it up and move on while allowing the hospice provider to subject yet another patient and their family to the same callous treatment. Personally, I'm shocked to hear of this level of neglect from this provider. I've had first-hand experience with hospice for both immediate and extended family at least 4 times. Only once did we ever have a complaint and it was dealt with and resolved immediately. I'm so sorry you're having to deal with this.

May flowers

Thanks, jmlarue. We have voiced our concerns to those in charge and we get a sympathetic ear and are told they will resolve that. That’s the last we hear of it. The one nurse who is the most critical of us is the one who has dropped the ball the most. Very frustrating.

I am hoping the next agency will be more in line with the good experiences I have read. Not looking for miracle workers, but just someone who will follow through! 

JJAz

So glad you're switching.  All Hospice is not created equally.  You are allowed to switch once during a certification period.  Many Hospice companies contract for their DME (beds, etc.).  The DME company will call you and arrange for pickup.  If the new Hospice company uses the same DME company, it will just be paperwork and no actual switching will occur.  DO NOT allow the original DME pick up their equipment until you have new equipment (unless it's OK with you.)  I hope the new Hospice company provides better service. 

dayn2nite2

To answer the question, the leaving provider will have all the equipment sent back and your new provider will have to have new equipment sent.

Also, make sure you know what you should be expecting with hospice at home.  You are still pretty much by yourself in terms of care.

May flowers

dayn2nite2 - I have not expected anything in terms of caregiving from hospice. The issues I have are outlined in my first post. 

ButterflyWings

Hey May flowers - I am sorry this has been your experience. As if our plates are not already full enough. Trying to get help and resources for our LOs should not create even more challenges.

I agree with all the feedback you've received already. Sounds like your expectations are 100% reasonable (meds, supplies, equipment, CG respite, emotional/spiritual support are on the list of what hospices are to provide). Their lack of follow up and communications is a basic business and professional expectation -- especially for health care providers in our "high need" situations. You are the client and the expert on your LOs needs. Blowing you off? No, no, no.

And your instincts to cut your losses with this agency now, are wise. A pattern is different from a 1x slip up right? Sure, everyone has an off day, but you are describing problems across the board. Multiple issues from several different roles on the team says the organization is the main problem. 

In addition to the unnecessary CG stress plus utter disregard for the possibly physical and mental impact on an innocent PWD, the kind of neglect they are demonstrating is a serious patient safety issue: Delaying UTI treatment can lead to kidney issues and/or sepsis I believe; late meds are asking for serious behavioral and even life-threatening issues, (even delayed or missing supplies -- that's not just an "oops"...e.g. what do we do if the incontinence briefs run out? Just keep mopping?? Wipes? Pads? Can't just run out and pick some up, with 24/7 supervision required. No, this is just unprofessional.) They still get paid full fare though!

We have not had a flawless experience, but it has been very good and exactly what was promised. The responsiveness is timely except just recently -- our agency was acquired and lots of cut-backs are rolling out. Morale is down, several staff have quit...we may be changing agencies soon too...or maybe I will pause hospice services for now. He's 7 mos. in next week, and doing much better with no recent falls, has regained weight (problem here though because he doesn't know when he's full so just keeps eating! I am hiding food, trying to portion control etc.). Anyway - the hospice changes are a little overwhelming right now with me also trying to get his VA services established. No-show HHA in week 2, etc. I'm thinking about pausing hospice to simplify all the things and people I am having to interface with (manage) right now. Running out of bandwidth and DH is really needy right now, which hospice doesn't handle . Nor do they manage his other meds for chronic condition. He is not using the equipment now that his balance, dizziness, walking etc is more stable. We can get reassessed if/when he declines again.

Here are links I found to support the decisions and questions you've already highlighted.

Hospice Care

Get information and resources for Alzheimer's and other dementias from the Alzheimer's Association.

 

"We can help

Your local Alzheimer's Association chapter can provide referrals to hospice care in your area.

The Hospice Foundation of America has information on how to locate a hospice, questions to ask when selecting a hospice, and resources related to hospice care and grief.

The National Hospice Foundation website offers guidance in finding and selecting a hospice program.

The National Hospice and Palliative Care Organization has a variety of free resources on topics including advance care planning, hospice and palliative care, and grief and loss.

May flowers

Thank you so much for the links, ButterflyWings! I’m sorry you have had some issues, I do think some of these agencies are struggling with low staffing. I’m glad your LO has plateaued. I hope he stays there a while!

You have said it much better than I did - it is the pattern of issues. Some things are just annoying, other things are serious imo.The lack of a sitter is more of an annoyance, because I get a call every week from the volunteer coordinator asking if I need a volunteer sitter and every week I say yes. They always say they have plenty of volunteers and will get someone out here. 12 times at least.

The CNA not showing up is also annoying - a phone call to let me know they aren’t coming would be helpful, because I would bathe him myself before I get him up.  

The medication issue and lack of response to phone calls regarding health issues is major problem though. For example, last week my FIL had problems withholding urine, I called about it Monday, they came out to cath him Wednesday, but they kept hitting something and couldn’t get it in. I asked the nurse to see if there was a medication besides Flomax to help him pee on Wednesday after the failed cath. No response. Thursday and Friday he was still withholding  (I changed 5-6 diapers each day and they were dry). I called again Friday and they called in a med finally. 

I am not looking for miracles. Even if he has prostrate cancer or some other issue that is causing this, I am prepared to hear that. What bothers me is they don’t seem concerned that he is in obvious pain, and are not communicating what it could be. If he has issues that are not fixable, it would be nice to know what to expect and how we can best keep him comfortable. 

jmlarue

"What bothers me is they don’t seem concerned that he is in obvious pain..."

This is the most troubling aspect of all. The fundamental reason Hospice exists is to provide comfort care. If they can't do that, it's an epic fail on their part. I hope you are able to transfer his care to another hospice provider without undue disruption and chaos. I suppose an option would be to see if he could be admitted to the hospital to see if they can resolve the urination problem. Perhaps that would give you some breathing room to resolve the hospice issue before he's ready to discharge back home.

Olly_Bake

The last hospice agency used kept having med issues. Meds that were DC’ed kept ending up reordered. Volunteers and sitters never happened with either agency although promised. Last hospice did send CNA for baths three times a week.

We have switched from regular home health to hospice in middle of contract (not sure right word contract) and all equipment had to be changed (at that time we only had hospital bed). So my thinking is that even though it is still hospice but a different agency, all equipment most likely will be removed and switched out (bed, bed table, geri-chair, oxygen, nebulizer, wheelchair, shower chair, etc. –whatever they ordered for your LO). My LO had an oxygen machine but both agencies wanted us to use their machine (didn’t ask why).  

Our dropping hospice took place after hospital admits. Don’t recall doing one in middle of contract (not sure right word contract) but both agencies always swore it would be easy peasy. I would not bet on it because the other one will probably try to convince you to stay. Jmlarue and I are on the same page. I too wondered if you would be willing to do at least one hospital emergency room visit to check on the urinary issue. Not only would you find out about that issue but other issues if they admit. Then you could switch that way. Whatever, feels most comfortable for you and your LO.

No flawless experience but some concerns. For example is them saying they can do x-rays and ultrasounds in the home but yet go round and round when you think it can help with a diagnoses like pneumonia. Never happened with either hospice. Then because they would not follow through when you request those options to avoid a hospital visit, round and round. 

First hospice provider nurse said to let nature take its course when the issue was fixable and not based off terminal issue they had listed. Last agency nurse said it is best not to know what is going on – basically saying let nature but in a different way. Another time I asked if my LO could be brought in to see the hospice doctor rather than going to the ER and was still told no. All of this is highly stressful as you state in your post with your experience.

With all of that being said, I’ll still use hospice when I think it is time but just expect them to have a med only approach it seems.

Rescue mom

I have been very happy with several Hospice groups—BUT the exception, and it’s been huge, was anything “relying” on volunteers, which was mostly for companionship, and/or residential respite care, which meant short-term space and staff, which there was never enough for the demand. And much sought after by countless groups post-pandemic.

 I put quotes around “relying” because I know volunteers have limits—and yes, there are countless wonderful volunteers whose service is invaluable and never appreciated enough.  But Hospice IME has a really, really hard time finding enough dependable volunteers. The hospices might rather not admit it, but they do, and I can see why. (Or, they have many who start but don’t last long).

The medical and equipment help has been huge, and excellent. The professional help, which is the big stuff, was great and excellent. I’d advise them for any and everybody. My LO did have  DNR, and I understood that hospital “visits” would be extremely limited. The purpose was comfort/palliative care, and all our hospices did great with that,

But I was disappointed in companionship and respite care, which I later realized in fact was offered on “space available,” “personnel permitting,” or various phrases that all boiled down “depending on if we have enough people/space.”

 I wanted to hear to hear otherwise, I hoped for more than was really promised, but in fact, there were conditions that boiled down to available space or people, and there was never enough to meet the demand.

May flowers

Olly, thanks for your response, you touched on many things that we have experienced too (sorry you’ve had issues with hospice too) We were also told that X-rays and ultrasounds could be done in the home, but that does not appear to be the case as we asked for one. When my FIL fell, and required a cut on his chin to be glued closed, the nurse had us take him to the ER , which surprised me. I really thought that was something they would have done in home because the ER visit was a nightmare. I had nearly stopped the bleeding with steri-strips before she got there. If I could have had help holding him, I could have put pressure on the area, but he was flailing around. (Extreme delirium- likely UTI related)

We did start him on the medicine but I just read that it shouldn’t be crushed as it can cause an extreme drop in blood pressure! He was really out of it after he took it this morning - maybe that was why. His BP is already around 90/50, he cannot afford to go much lower. 

Tonight we got him ready for bed and saw that the supply company sent child size diapers. Sheesh, not hospice’s fault but just frustrating.

I want to avoid the hospital, but I do think a urologist visit is warranted. 

May flowers

Rescue mom, I thought that was the probably the case too, but I have been told every week by either the social worker or volunteer coordinator that they have plenty of volunteers. They call and ask if I want one, I say yes, then nothing. It’s crazy. The CNA even said she doesn’t get it, because she knows they have people waiting to go out to jobs, not doing anything.

I wonder if part of the problem is the volunteers don’t want to travel this far. Regardless, they should just let me know that. Anyway, the sitters is a side issue for me, we ended up paying for one privately who we can rely on anyway. Starting next week we will have a 9-2 caregiver, M-F through an agency. I am praying it works out. It should be a pretty easy job for them once we get past getting him dressed, diaper cleanup, and into his chair. After that, he is pleasant and cooperative, thankfully.

Olly_Bake

As far as supplies, I didn’t like the underwear provided so I stuck with my beloved Tranquility brand although a bit expensive according to some family members. Hospice had a good laugh when I told them the ones they provided look like a thong rofl. So the nurse opened a pack and said she had no idea they would not cover the hip. Hospice provided other supplies like under pads, gloves, ointments, and wipes.

May flowers

We get gloves, pads, diapers, but not wipes. It usually takes about 4-6 weeks and 2-3 phone calls to get anything.  I agree about the diapers. Especially overnight, the tranquility brand plus a booster pad in front keeps him dry enough to sleep 10 hours. I keep my own stash for night time. I don’t mind the hospice provided pull-ups during the day - they work good enough for changing every 2 hours.

ButterflyWings

May flowers - 4 to 6 weeks?! That is way too long. Hospice is traditionally a 6 mos or less life expectancy (though that is a little or a lot different for our PWD LOs). So, I have always experienced a sense of urgency on the part of hospice service that I thought made perfect sense when time is potentially short for the patient and family. The two I have dealt with, were fast.

Our nurse/care coordinator places his med + supply order every week or every 2 weeks. We typically receive meds that same day, even if the delivery guy texts and knocks at 10pm. Or next day if ordering after 5 pm. It has always been less than 24 hours to receive the med refills. Supplies are usually on my doorstep via UPS within 2-3 days max. Twice in 7 months, one item was on back order and came separately a few days later but I was advised of that when the order was submitted. *Forgot to list the supplies: we get underpads, diapers, briefs, wipes, gloves, no-rinse body wash/shampoo, lotion, ointment, etc. She reads me the list; I say Y or N. 

The nurse initiates ordering everything during her 1x weekly visit. Very efficient and very thorough. I have not ever had to call in a med or supply order except when she was on vacation... I had to follow up with the SW I think, or maybe she had me call the on-call nurse to verify if we were going to run out of anything. We did not. 

I would say even the supply error was likely on hospice (child size briefs must be very little. I order the tabbed version 'diapers' for next to his body. They are way more absorbent. Then 1 pkg of pull-ups every month ish. I use them over the 'diapers' to hold things together better, and discourage my DH from messing with the tabs. It is fast and easy to switch out the tabbed ones when he's toileting. No wrangling his legs in and out of briefs and pants). Back to your issue: Seems like someone was rushing or lax, and did not input the order correctly. That's my guess. Maybe due to being overworked and understaffed, or possibly uncaring and incompetent (the one staffer you mentioned having issues?) I think you got a dud with this hospice agency. This is so frustrating and that your FIL is in pain as stated earlier, makes it all totally unacceptable. You and DH are so right to vote with your feet on this one!

May flowers

So I got a call from our case manager nurse, who we love and who is very competent and follows through quickly on every issue - within minutes typically. She asked if there is anything she could do to convince us to stay and make things right. She agreed that all of the issues we had were absolutely unacceptable and should never have happened. She was not in the loop on all the previous UTI stuff. Now that she is, things are happening and at a quick pace.

I told her that I had an idea - if she was agreeable - could she be my FIL’s main contact and visiting nurse. She said that is no problem, and most of her visits are in this area so it’s no issue at all. She has always seemed to genuinely like my FIL, and us. 

Anyway, we have a new med to try and other good ideas from her.

We also have a new part time caregiver who is wonderful so far. She knows how to talk to a PWD, patient and kind, and keeps him in his normal routine. FIL really responds well to her so far. 

ButterflyWings

Way to go Mayflowers! Great advocacy for your LO! It is so stressful and time consuming to have to do battle almost, on their behalf — seems like all the time sometimes. But when necessary, it just has to be done. And when it works out, well worth it!

Joydean

May flower this is great! I’m so very happy for you and your family! I hope you can take a deep breath and relax for a while! Just enjoy a win ! Prayers for you, your family and your FIL!

May flowers

 Butterfly and Joydean,

The hospice issue is a load off for sure. The caregiver is great with my FIL but has been a no-show yesterday and this morning.