Assisted living hospice care; Do I have the choice to bring in any organization of my own choosing?

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Assisted living hospice care; Do I have the choice to bring in any organization of my own choosing?

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My Mom's AL recently partnered with an outside hospice provider I am managing all her care even though they were pushing me to sign her up. She's very independent and navigates well. She is 95 with CHF they told me "that its just a matter of time before she declines" which I didn't appreciate. I have no problem bringing in hospice when I think its time. However, by my interactions with their provider I don't think I would use them. Do I have the choice to bring in any organization of my own choosing?

Assisted Living Care Decisions Hospice

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You can use any hospice you want. The facility tends to steer you to the one most active at the facility. Contact several hospices to talk to them, get educated before you have to decide. When the time comes, things move fast, planning is important. Of course a hospice can say the don't go to a particular facility. Only a doctor (in some states a physician's assistant as well, possibly a nurse practitioner)can certify a person for hospice. Your decisions are 1)ask the doctor to determine if hospice is appropriate 2)refuse hospice when offered 3) choose the actual hospice provider.

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My understanding is that you can use any hospice that has a contract with the facility. I would contact the local hospices to find out.

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It may be helpful for you to obtain an elder lawyer simply because they could look over the contract that you signed with the facility. I'm not saying that you, yourself couldn't do it, but what if it's such legalese that you might miss something?

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I would say unless it says something in the contract you signed about having to use services they contract out you have choices. I do know that many places have some clause about outside services you hire needing to be "approved" but that is typically a fairly good list of options and I'm sure any reputable company can be added even if they aren't quick about it in hopes you use the one they have some deal with. I would be very uncomfortable using a service doing the things you describe too and I seriously doubt signing something now with them will make them come any quicker than doing it when or if the time comes.

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In AL don't think you have to use their provider. If you are paying for care, you should be able to select provider. Hospice is paid by Medicare anyhow. Hospice can be provided by a non-profit like a VNA or a private pay company.

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I ask the AL management for their suggestions on which Hospice group they thought was best. They were very helpful and knew a lot. Having good reliable Hospice care makes their job easier as well.

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I’ve used hospice in my home twice. I’ve used two different companies, one with my grandmother for over three years, I learned so much and they were so helpful. The second one for a very short time that did not connect well with me and I did not feel comfortable with their aid, so I fired them and went back to the one I used previously. they continued with me for over two years with my aunt. To that end my aunt had CHF. It was so helpful considering I did not know when my aunts CHF was active and there was an aid and a nurse there to alert me to breathing difficulties to assist my aunt with oxygen to walk with me so that she continued to get good care from me due to their coaching. Their goal is the client feel comfortable instead of struggling to breathe or waited down with water weight. I’m unsure that I would’ve noticed the signs (without their help) that she was in distress or pain. My experience is that hospice is not there to direct death more quickly but to allow a safe calmer passing for those who are in deaths grip and for those who are watching over them.

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You have a choice of hospice. My mom with Alzheimer’s, was on hospice twice while in AL. My warning is that the last time my mom went off hospice, was that she had deteriorated quite a bit and then plateaued for several and gained weight. She no longer qualified for hospice, therefore the she had to be transferred to a LTC facility because the AL could not give her safe care at this level of function. As far as DNR, with CHF, it can be a difficult end, fluid gets congested, filling the lungs because the heart can’t pump it out through the body. The person feels like they are drowning or suffocating. Hopefully, the heart stops before that, and she just goes to sleep and does not awaken. I am glad your mom is doing well. As far as CPR; on an elderly person, it is traumatic, often with rib fractures. A good book to read to help sort out your own feelings and beliefs and maybe your mom’s desires is On Being Mortal by Atul Gawande. Also some hospices give palliative care, allowing patient to get treatment and then transitioning to hospice care when needed.

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My suspicions would go up anytime any place is pushing for something. Sorry, but my cynical nature is screaming "kickback" or some benefit for signing people up. Who is this hospice, and what is THEIR reputation? EVERYONE is going to probably decline in a matter of time, and to say that as a point to push you doesn't fly with me. Go with your gut. I don't know the answer to your question, but calling another hospice program you feel good about, they will know and be able to guide you. Or your local Long Term Care Ombudsman office. I do recall something...that we had a client who moved into an apartment building that had been recently designated assisted living or long term or something, and by laws that govern those there were requirements...so that if our agency employee wanted to go to provide service there, they would permit it, but ONLY with documentation that met those standards, which was a bit over the top for the two hours once or twice a month it would have been.

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I don't know but I would stick with my gut and try to work something else out. I didn't appreciate medical staff (several) always pushing me to have the advance care directive completed as "DNR". It wasn't my decision, but my responsibility to coordinate it's completion. I am against them because I've felt DNR's are for the convenience of emergency response personnel, not the person. I witnessed the death of my friend; he was 92 w/lots of problems, but he lived for his wife, 90, who was mentally in a worse condition. When he had trouble breathing, paramedics arrived and began to help. When they asked the caregiver on staff if he had a DNR they said "yes" and the immediately removed all assistance they had begun providing, packed up, and left him to die. Which he did. I heard of another story that a 55 yr old man went to the hospital from a heart-attack. He had signed a DNR (for future use!) but that didn't matter; they didn't help him and he died. A friend of mine, their close friend had a DNR (again, for future use) and they had to fight tooth and nail to get him an IV of something for him. There's a big misconception that a DNR will be saved for that situation where you are a vegetable, no longer able to sustain a life you would call "worth living". I see it as a convenience for emergency response personnel not to provide care so they can 1) provide care for more 'worthwhile' patients - ones who aren't in their 90's and maybe not having the greatest life, but like my friend, he was content to live for his wife. Think carefully about signing up for a DNR. It means what it says, no matter what. Sorry I used your question for my pet peeve but I want to get the word out. So many people don't understand how they really use it.

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Wow. What an eye opener your message is...thank you for sharing. DNR's clearly need to be very specific, but even so, such a danger in the hands that don't know the patient well...

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I was reading answers below and that is not my experience . Yes hospice showers my Dad but only two days a week and his facility showers him an additional day. The assisted living still does everything but hospice comes in to check my Dad and makes sure I know what’s going on. They also provide most of his meds and pay for them.

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You can choose any hospice you want. They cannot force you to use theirs. At least in California so I would check.

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Friendtotheend. I am sorry that has been your experience of assisted living with hospice. My experience was much different so I don't think people should assume anything. Hospice coordinated with the assisted living place my mom was in. Hospice provided showers and nurse visits, but when my mother was bed bound, the assisted living staff also cleaned her up in bed and changed her pull ups. They were quite wonderful. When she was still eating they helped. (This doesn't always happen even in nursing homes BTW).Hospice also has volunteers who can help. I was alone and tried to be there as much as I could but it's tiring. At one point, the assisted living staff told me I should get something to eat. I left the room. A few minutes later, my cell rang. One of the aides had gone in to check on my mother after seeing me leave her room. My mom had died moments after I left her. The aides all told me how often this happens and not to feel guilty.

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Yes. Someone I know who worked in a hospice said that happens often enough that they think people ‘wait’ until their loved ones are out of the room before they let go.

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The answers here are good advice regarding hospice to use when time comes. However, if I may add to this, when the time comes for hospice, my experience with assisted living in two separate cases and facilities is that the AL pretty much does nothing for the patient since hospice has been utilized. They don't bathe, clean, help in any way. So be mindful of how much time hospice will be there. I had a friend who laid in urine and feces until hospice came, twice I came upon this. Meals were parked in the room, nobody but hospice or myself to aid the person . In fact nobody even realized she had passed until hospice came at their regular time the next morning, even though she had taken a nasty fall the previous day. It is ASSISTED, so while they will happily suck the money , the expectation is the "resident" should be somewhat self reliant no matter what state of decline.

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I believe this is very important to know; thanks for bringing this to our attention.

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There are two types of Hospice
For Profit
Not for Profit.
It is very possible that the one your Mom's AL partnered with is ...For Profit. This may be a financial partnership where both profit. Keep in mind this is speculation on my part.

You have every right to have whatever Hospice you want.
You can research all the Hospice that are in your area. You can "interview" as many as you want. You can look at reviews and make an informed decision just as you would when choosing any health care provider.

Personal note here...
There is no such thing as "too soon" to go on Hospice. My Husband was on Hospice for just over 3 years. As long as there is a "Documented, continued decline" a person can remain on Hospice.
What I can tell you is your Mom will get more attention, more contact, better care being on Hospice. All supplies will be provided, medications, equipment. She/you will have the ability to request music therapy, some types of massage therapy, pet therapy, a Volunteer can come in and visit with her, she and you will have a Social worker, Chaplain, a Nurse will visit her once a week, a CNA will come in to help bathe and dress her a few times a week. (This will probably replace the bath done by the facility if they do that now)

the Hospice I chose was a Not for Profit. They are well funded and they will turn no one away.
I can not tell you how pleased I was, kind, caring people. If I needed something in the way of supplies or equipment (within reason) usually it could be ordered and delivered within 24 hours.

So do your research and find the best in your area and get Mom on Hospice as soon as you can I do not think you will regret the decision. And best thing is if you decide that it is not right you can withdraw from Hospice and call them at a later time.

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Thank you really appreciate your help

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Unless you have signed a contract stating that you will only use AL services, you can select any hospice provider that will accept medicare. When the time comes, you can even move your mom to a full-time Hospice facility, if you feel the AL staff can not provide the level of care you desire for her in her last days. I recommend calling or even visiting Hospice agencies in your local area to get a better feel of the level of care they offer.

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Thank you so much for your help what a journey

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There is another post similar to this one in the last couple of Days. The Poster did sign Mom up and then took her Mom to the doctors and Medicare did not pay for the visit.

When on Hospice you usually don't go to doctors or to the hospital. Sounds to me that Mom is doing well on her own. Maybe the AL likes having an aid that Medicare pays for.

Unless you have signed a paper saying you understand by living in their facility you also agree to use their Hospice, no you don't have to use theirs. Medicare pays for Hospice. The resident or family has to OK Hospice services, not the facility. You can bring anyone in you want. The AL is Moms residence. Hospice does not have anything to do with the AL staff.

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Assisted living hospice care; Do I have the choice to bring in any organization of my own choosing?

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