Hospice(22)

CareBear81

My mom has been in hospice (at home) for 5 months. I'm starting to have some issues with the hospice she's in. For example, the doctor has only came to see her once in 5 months, constant staff changes (we have had a new nurse every month since she's been in hospice), and I feel like they're not being honest with me. I have a list of questions, but maybe you folks can help me think of some questions as well. I am having a teleconference meeting with the entire staff on Thursday and I don't want to go into this meeting looking like a fool. Oh! I forgot to mention this and I think it's totally weird. So at the hospice my mom is using the woman who is in charge or runs the hospice, she is the first line of contact when making an after hours call. She answers, then she hangs up to find an on-call nurse. Does that sound strange to anybody? Anywho, thanks in advance.

Cynbar

I do have some input on a couple of your points. Here in my hospice, the doctor who is the medical director never goes out in the community to see patients, or at least I have never heard of that. Some patients do go out of the house to see their own doctors, but it has nothing to do with hospice. I have heard of the doctor going over to our hospice house occasionally, but even that is not frequent. I'm not sure what you think the staff is being dishonest about, you'll have to elaborate a little on that for us to comment. It does sound like you have had too many RN case managers, consistency is important and you should ask management directly why that is happening. The after hours process sounds the same as what we do here --- you first speak to a triage nurse who will assess the situation, then contact one of the on-call nurses in the field if a visit is needed. But after saying all this, I want to add that it's so important for you be confident in and comfortable with your hospice. If that feeling just isn't there, look around for another agency.

CareBear81

I have 2 pages worth of notes, haha! 

• Why is there such a big turnover with staff
• Be notified of staff changes
• Sometimes we feel staff visits are rushed. How long should staff be spending with the patient?
• How does the hospice measure/track quality service
• How rapid is crisis response? Where would this person be coming from? What is the average response time?
• How many nurses are on staff?
• Will a staff member be on-site when it's my mom's time to go?
• Are MDs/RNs certified in palliative care? (i know it's not required)
• Do you hire your own employees or do you use agencies?
• I'm looking for a nurse first after-hours service that directs call to other nurses-a nurse first system
• If the first person you talk to is an administrator, not a nurse, we're basically getting an answering service or patient coordination (THIS IS MY #1 ISSUE. Because then admin has to call a nurse and that's more than a 30 second process)
• I wanted an MD to come out and assess my mom's back. She is super hunched up and it happened all in one day. I just wish he would come and check her out instead of what the nurses are telling him.

CareBear81

Oh. I almost forgot to mention. We were told that her MD out in town would no longer be her doctor and that the MD through the hospice would be taking over. He has his own 24/7 ER in another town. I don't see how he has time to take on a hospice. That's just me though.

King Boo

The flag is the MD thing.  While having a Hospice physician as their main attending for the dying is the norm, saying you don't have access to your regular PCP is NOT. . . . .if you can elaborate more on this it will clarify.  

We saw ALL our regular MD's as needed for non hospice related things - podiatry, psychiatry, PCP.   My LO was in a very good facility with inpatient hospice available for the final day.  

No hospice can guarantee they will be there at the time of death, but they should be readily and easily available for increased visits by the hospice nurse and certainly available for medication/management questions.   

You are absolutely allowed to change hospices, investigate local non profits, local for profits with an excellent referral source (your elder law attorney may know).

The high staff turnover or inconsistent staff is indeed a problem - the support is part of the dying experience for both of you.   However, it is what it is.   Unless it is a scheduling problem, the WHY doesn't really matter.  They stink at what they do and you need a new hospice.

It IS, however, important to realize hospice is an extra layer of services ON TOP of your regular care plan.   Aides, MD visits for non hospice related issues, are still in play.  Some people new to hospice expect more services than are offered.   But I am sensing a poor administrative function for this hospice from what you are written.

Look for posts from JoC on hospice, she is a Peer Volunteer who has written extensively and has excellent posts on the topic as an RN and caregiver

Cynbar

My goodness, you are very organized! I'm impressed. I do have a couple more comments. The triage person you get after hours or weekends should be a nurse, who assesses the situation over the phone, makes suggestions and decides if a field nurse should be sent to the house. I too would be very concerned if you only get an administrator. But here, most of our management staff are nurses -- could that be what is happening with your hospice? If not and it's really a person with no medical training, that would be a big red flag. As far as how long it would take a nurse to arrive during a crisis, that can vary. There is limited staff working off hours, one should get there pretty quickly unless they are all tied up with other patients. Of course, the goal is to keep the patient comfortable with regular nursing visits, so emergencies aren't all that common. It is not likely that a staff member will be present at end of life. The nurses make intermittent visits, but family members or private help are the main caregivers. You would call the hospice when the patient passes, someone comes out to do the pronouncement. An exception to that would be if the patient is having uncontrolled pain or agitation, when either Continuous Care or (more likely) General Inpatient care (GIP) in a facility would be provided. But most patients do pass peacefully. As to your last point , our patients retain their PCP who continue to address issues such as your mom's back. The doctor may suggest an office visit or may get enough info from the hospice nurse, some PCPs make house calls (or send their nurse practitioner). But the patient and family know the issue is being addressed. Our medical director handles issues directly related to the terminal diagnosis. Sounds like your hospice nurse isn't communicating too well with you. Good luck with your meeting tomorrow, I hope you get answers that will satisfy you.

Cynbar

Also ---- a hospice nursing visit would usually be about an hour, sometimes shorter if everything is stable and no one has many questions. If your visits are a lot shorter than that, or if the nurse is running out the door while you still have questions, that's a problem. Quality of care is largely tracked by extensive surveys sent out to families after a patient passes, and many do fill these out. Ask your hospice if they do this, and where you can find the results online. If they put you off or try to avoid the question, that's another problem.

jfkoc

All good questions... I would  go over the reading material given to you when your mother was accepted. It will answer a lot of your questions.

We always used our PCP not a Hospice Doctor. Health problems not related to the reason for admittance to Hospice will not be covered. 

CareBear81

My dad just mentioned to me that he called her PCP and they told him mom would not be able to see her PCP under hospice. Thought? Suggestions?

CareBear81

The main person who answers the phones after hours is the executive director with no musing background. She asks me what I want then calls an on-call nurse them the on-call calls me. It just seems like too much time wasted. I can’t remember if the executive director has tried to give me medical advice. That would be a no no since she’s not a nurse or anything.

Cynbar

CareBear, these are certainly two areas of major concern. Your mom should be able to see her PCP if she wants to, for issues not connected to her hospice diagnosis. And the first contact person after hours should be a nurse, who can assess the situation and often give you immediate advice to help with the problem. I have never heard of things being done this way, and I too would be worried. May be time to look for another hospice if they can't satisfactorily address your concerns at today's meeting. If they try to tell you all hospices do things this way, they don't.