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Hello,
Has anyone had better or worse experience with non profit vs. for profit hospice providers? I'm thinking of changing providers for my mom.
I am dealing with a very difficult*patient* with a mix of conditions including vascular dementia. Today, for the second time, I asked a specific nurse to please change moms bandages and measure the wounds for me, as I really didn't have time or the steam. (I'm homeschooling my daughter and trying to work).
Anyway, about 2 hours after nurse leaves, I come down from my office. Then mom informs me the nurse told her she left the bandage changes for me. This is also the same nurse who told me she didn't *do* suppositories, but she would happily call it in for me to do!
I think my mother may need more care than what liberty hospice can, or is prepared to provide. I've also discovered they are a for profit, they have 3 nurses to handle THE largest county (and senior population) in the state. I'm thinking this particular nurse may just be lazy, but I can't have a lazy hospice nurse! She claimed mom was just in way too much pain for her to take off the bandages. I think that was an excuse. She has pain meds they could have administered if she was *so* miserable- I thought if the pt. was having uncontrollable pain, they were supposed to Medicare, then stay and make sure pt. is comfortable before leaving? Not run like hell! Right? Also, isn't a doctor supposed to show up from time to time? It's been since December, 2022 she's been in hospice and I haven't seen an MD, FNPC, PA DO, Nothing! Also, aren't the physicians supposed to visit? At least for recert? Only RN 1-2x, CNA 1x and Aide 3x per week. Aide gives bath and leaves, CNA does Bp and leaves. RN asks have you had a BM, checks oxygen, asks if I need supplies, then leaves. They are inside my house MAX 15 minutes. I've timed them.
I've done this caregiver thing for mom alone for 6, almost 7 years alone for the most part, from lung cancer, metastasis to the brain, craniotomies, strokes, brain swelling, arterial bypasses, wound packing etc. I don't get paid, but by grannies, this hospice does and well, and now, it seems that as care is starting to get harder/ more involved, they seem to be flaking out on me. I need help now more than ever. I have to have dependable people.

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TheMaid, I'm SO glad you switched providers!
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I worked with Hospice of the Valley, a non-profit, and found them very efficient and reliable. You are right about caregivers suffering along with their recipients which often times cause health consequences for the caregiver. You may want to seek out a support group for yourself or at least some individual counseling to develop coping strategies for yourself.
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Themaid Jun 2023
Good news! I changed hospice orgs! It's been 4 days and I've already had more help in the past few days that I had in 6 months with Liberty Hospice! I'm hoping this lasts. Oh! The very 1st thing I was told- set up respite ASAP! It matters 💕 they are concerned for me too! I'm my whole life, I've never had someone be concerned about my mental health! I don't even know how to act! Thank you for responding! It means the world to me!
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My late mother's hospice provider called me yesterday to see how I was doing. They offered an online newsletter and said they could set me up on Zoom with grief groups. They told me they would be available to me for 1 year for any support I might need. I know they might not be able to meet any need but the caller stayed on the phone with me and seemed to care how I was feeling.

I am not sure if I will seek out a support group but if I did I would prefer one that wasn't online. I did one when my father passed away in 2010. His end came on faster and I felt bereft. My mother's health has been declining for some time. While I knew the end was approaching there are still difficult moments I have to talk myself through.

I am just offering this as an example of a positive hospice experience. The hospice nurse my mother had was truly wonderful and a great communicator. I hope you find one that brings comfort all around


.
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I did not know Hospice doctors ever came to see patients.

Our Hospice sent a nurse to check vitals and renew medications 2xweek and an aide 2xweek to help with bathing or bring supplies. The rest was up to me.
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Themaid: Seek another hospice provider.
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I used EDEN HOSPICE. It's employee owned. I was very impressed with everyone who came in contact with me and my dear husband. Some were stronger than others and had differing talents, but all were wonderful.
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Like everyone else says here, GET SOMEONE ELSE. Can you also find a home heath provider who can come help you (might be out of pocket for a short while but it can relieve your anxiety while you find a better hospice)? One thing I learned on this journey is that no two hospices are the same and when your primary care doctor or nurses in the area or people who just are familiar with hospices tell you that there are certain things to watch out for with certain agencies, heed their advice closely. My husband is a primary care doc and boy oh boy was he spot on when he warned me about certain pitfalls for my dad. If I had not been told ahead of time about these things my dad would have lost the last 6 months of his life immediately. Because we changed hospice agencies we had him for another 6 months.
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I've had extremely different experiences with two separate Hospice organizations. One couldn't have been better. One almost couldn't have been worse.

Much may depend on finances as Hospice doesn't cost anything to the client.
And, a person doesn't need to be dying to qualify for Hospice.
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Recommend that you please do reach out to the current hospice provider administration/ and clinical supervisor with all of your concerns, if you wish. Have you done this?

Yes, you may certainly request a transfer of hospice care services to another hospice of your choice; you may want to confer with your mother's PCP for a recommendation in your geographical area; or you may choose one yourself after speaking with several others. The current hospice provider must follow through with the transfer of care services to the hospice you designate.

You may also want to consider
" hospice respite" care for your mother ( in patient hospice care for 5 days paid for by hospice which is provided by all hospice providers). You can speak with the current hospice provider about this if you wish. This is a benefit that all hospice services provide, as it is well known that the " family", " Primary caregiver" / family in the home will need a BREAK.

Be sure that you are also utilizing all of the " interdisciplinary services" such as the social worker, chaplain for your care and support also !
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You can certainly ask the “company” for a different provider. But changing companies may be difficult because because of insurance implications and if the new company is “approved”.
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Sending prayers. Hospices receive a good bit of money from insurances. The service they provide should match the amount of money they are taking from insurance providers. For Medicare, i believe it is about $150 per day. Check into that - report to the payors about the poor service. I often think, if someone gave me that amount of money to spend on my personal care daily, I'd look pretty darn good by the end of the day. It doesn't sound like you are getting much - an automatic blood pressure cuff from the drug store can take a decent blood pressure. Again, sending prayers, from a caregiver exhausted from much, much less than you are handling. God Bless your choices, but do change!
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Re finding a care facility, if you're interested in having your mother go into a live-in hospice facility, you could start by googling "hospice facilities" + your location to see if there are any such facilities near you. If you're looking for a nursing home that includes hospice patients among the people they serve, Medicare provides listings of nursing homes with ratings. If your current hospice provider has an affiliated social worker, you could also try to contact her/him regarding facilities. It's probably less likely that a hospice nurse would be familiar with live-in hospices and appropriate nursing homes than would a social worker.
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Jdjn99 May 2023
It’s a Medicare requirement that a hospice has a social worker, you should have already received a visit, if not, ask for one and if it’s not available, fire the hospice immediately.
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I have heard that the difference between profit and non-profit hospice is how much someone can be charged and the estate be liable after the person dies. As far as the care you get, there should be no difference.

Like others have said... there are many choices of hospice and if you are not comfortable with the way your loved one is being cared for, you have every right to change hospice servers as often as it takes until you find the most appropriate. That being said, I believe you also have the right to say you don't want a particular health professional back in your home... if that is not possible a meeting with the administration is in order to be sure the care plan is understood by everyone involved.
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FIRE THEM!

yes you can and should change hospice care. They are not all the same. Be sure to tell them WHY when u fire them.
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Change! Your mom and you deserve better treatment than you are getting.

I would file a complaint with Medicare about the neglect by the current hospice.
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You are not obligated to stay with any hospice provider that you aren’t comfortable with. You shouldn’t be loyal to a provider that you aren’t pleased with.

You can switch providers at any point in time even if there isn’t a problem.

We switched providers for my mom because she was close to a particular nurse. The nurse was very fond of my mother.

The nurse decided to work for another hospice organization and told us that if we wanted to continue having her as mom’s nurse that we could switch to the organization that she was moving to.

We looked into the care of the other hospice organization and decided to switch so that my mom could continue having wonderful care from her nurse.

Don’t hesitate to switch to a different hospice provider. Do research and find a suitable replacement.

Best wishes to you and your family.
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Seek another hospice provider. I wish you luck and your mother.
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I don't think profit or non-profit matters. Some hospice agencies just stink at what they do.

Between my two parents, I dealt with three hospice agencies. The first was Vitas, a huge nationwide company, and they were terrible. After I fired them for several of the same issues you're having, I hired a small, local agency that was also for-profit, but family-owned. They were great. So, too, was the for-profit company I used for my mom.

I recommend checking Yelp.com for reviews of hospice agencies near you and also contacting a local nursing home to ask who they use the most. Those are the ways I got the two good companies I hired. My dad's insurance company (Kaiser 🙄) is the one that stuck us with Vitas.
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Themaid May 2023
I semi suspect my mom got liberty for the exact same reason! (Thank you for taking time to answer my question) I appreciate it so much. Between mom running me ragged and this hospice situation, I feel like I'm going to die before she does! These insurance companies are awful and sometimes I think they recommend hospice because they get sick of medical bills. It seems like all the sudden, after all the issues, cancer, arterial issues X5 and the brain stuff, they just tap out. She is 71. I've been taking care of her since she was 60.. well of you account for the alcoholism when I was a child, my entire life. But that's a story for another day. I'm already starting to get rather resentful of the fact she's been my responsibility my entire life, but the past year, it's been worse and the help is what is keeping me from ending up in the nut house! When I told them she was in pain but didn't want morphine, they told me to give her ibuprofen; however she is on massive amounts of blood thinners. So I am wary of any of their recommendations since then. I definitely need trustworthy and that particular recommendation gave me chills!
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Bottom line, if you're not happy with this hospice agency seek another. Your mom deserves to have the best care possible and to be able to die in peace.
The hospice agency we had for my late husband did have a nurse practitioner come out to the house about every 3-6 months, otherwise it was just the nurse once a week to start and aides twice a week to bathe.
But hospice nurses are supposed to do wound care and if needed they can put a suppository in your moms butt as well. The hospice we used was a non-profit one, but because my husband was under their care for 22 months, I had to stay on top of them constantly, as they weren't used to someone living under their care that long.
You must remember though that even with hospice on board you will still be responsible for 99% of your moms care, as a nurse coming once or twice a week to check vitals and aides to bathe her a few times a week, really isn't much in the big picture of things.
I had to hire an aide to come in the mornings to put my husband on the bedside commode so he could poop. Otherwise I did everything else myself.
I would also recommend that you are present(as in the same room)when any of the hospice workers come to your house. That way you can make sure that things are getting done properly. No more staying upstairs and coming down 2 hours after they leave. If you're there, you'll be able to make sure things are being done that need to be.
Again, whether profit or non-profit, you still have to stay on top of them to make sure moms receiving the best care possible.
I wish you and your mom the very best.
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We certainly had no doctor visits at all with hospice. Nurse visits were usually twice a week, with more if I called with something needing more attention. The aide came twice a week for baths. The rest of the hands on care was on me and the outside aides I hired. These were workers not employees of the hospice agency, but people they were familiar with and had worked with, all of them excellent and their help was invaluable. It’s a misconception about hospice that they do the caregiving, but if you’re unhappy with what they’re providing it’s certainly your right to change agencies, nothing wrong with that at all.
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Themaid May 2023
Thank you,
I don't want to expect too much of them either. But I do need help. I'm only 1 person and I'm spread very thin. I just worry about the ulcers because they don't seem to be concerned. I'm doing dakins, wet to dry, medihoney and ABD pads I cut to fit, etc. Things I've bought after research online, things they won't supply. They told me it was too expensive. They did give me gauze and paper tape!
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I am going to take one of the last parts first.
The Doctor does not necessarily have to come see your mom. The doctor relies on the documentation that the Nurse, CNA, Social Worker and the rest of the Hospice Team provides.
For a Nurse to not change a bandage, dress wounds, monitor a pressure sore is in my opinion neglect.
If you are truly unhappy with the care that mom is getting and the respect that you both are getting then I would change Hospice. I think a phone call to the Team Care manager is in order. I would let them know exactly what has happened.
By the way Hospice is also supposed to have Volunteers that can come in and help you, help mom. Typically it would be 1 time a week for a maximum of 3 to 4 hours. The Volunteers can do no "hands on" care. Volunteers are a Medicare requirement so all Hospice will have Volunteers. Ask the Nurse or Social if you would like to have a Volunteer.
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Themaid May 2023
Thank you Ms. Grandma1954,
I am finding it difficult to get in contact with the case manager (social worker). Our last conversation was well over a month ago, she doesn't visit either. I feel abandoned to be honest. I will absolutely ask about a volunteer. I wonder, as they are for profit if they have volunteers? I will certainly ask! I have days where I'm finding it difficult to put 2 foot in front of the other. I am definitely burned out, I've actually told them this. I have asked them to even help me get her into a care facility. No response, not a no- just nothing. I need people to do what they say they are going to do. I guess because my sibling, the 1 person who should be here won't lift a finger to assist. She just comes in to my house, barks orders about what she feels needs to happen, then leaves. I'm sad too, I feel very trapped. I am trying to keep the peace for my mother, but after she dies, I don't want any contact with my sister or moms extended family. When it's good, they're all around but when it's crunch time (and now that mom is penniless) *crickets*
Thats a situation for another day! An online Love scammer took every dime of moms money. Well, she gave it to him. She gave away, pawned, sold everything, except the house and that's because my grandmother put safeguards in place!
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