Hospice assessment and in-home hospice: your input asap please!
I'm currently out-of-state living with my 105-yr old Aunt in southeast FL who had to go to the ER on Tuesday with CHF symptoms. The "diagnosis" on her discharge paperwork says "aFib". She is still lightly panting, has weepy, slightly swollen feet and lower legs, is fatigued. They put her on diuretic, and 2 pills to regulate her heart. Oxy level = 92, BP last night was 121/70. We're in her home and she still manages to get around in her walker, but it exhausts her. She says she feels ok, except for the breathlessness.
Today we have an in-home hospice assessment this morning that will last about 2 or 3 hours. We want to honor my Aunt's desire to pass in her home. There have been 2 nieces (my cousins) down here for years tag-team tending to her. She still has amazingly good short-term memory and cognition.
What should I expect at this assessment? What questions should I be asking?
Thank you!
It sounds as though your dear one now will pass. Her BP and her O2 levels are GREAT, but she is weak and breathless and the CHF means her heart is in failure. While that can be successfully treated with diuretics in the younger person, she is truly facing the one thing that cannot now be beat and that is age.
What you want now is COMFORT. That means that you want the medications given that will make her as comfortable as possible. She may still "look breathless" for the duration, and in reality be so, but if she is medicated to a level of comfort that's important.
I know you know that any increase in medication needs may hasten her death by minutes, hours, even days. But she should be comfortable as you can make her.
Allow her to eat when/if she wants; don't push food or fluid. Ask her if there are any special things she would like brought in. Be sure you can keep head of bed elevated to keep pressure off heart and lungs and assist breathing. Get in enough pillows to brace things if there's no hospital bed. Ask if she wants music, to be read to, or just to be allowed to "let be". She will at some point, perhaps, disengage. Be busy with some mystery we can't know till we are there, less communicative. It sometimes seems to family that they have almost become "pests" that must be dealt with but the one leaving no longer wishes to deal with. Like being between worlds. I always think of it like children in the back seat of the car, almost asleep, hearing the comforting drone of parents, but not really listening anymore. Comfortable to disengaged.
I am so glad you are with her. Hospice will let you know what to expect. Ask them for signs of death. Watch for cooling and mottling of lower limbs. Ask for as much support and good guesses as they are willing to give/make. Tell them you understand she is dying and that you know meds may hasten her death but that COMFORT is what you now need for her.
I know, Geaton, you are a woman of great faith. They should have clergy but it's come down to a phone call from them in many areas nowadays and if you want clergy support right there tell them you do.
I can't really think of much more that you aren't fully aware of, and I think you are fully aware of all the above, long as you have been here. I am so glad you are with your dear Aunt now. Ask her while she is able to let you know where any papers, hidden stuff, and etc is at.
I'm so sorry for this and so glad you are with Aunt now.
Does she have someone that will be able to be a full time caregiver if and when she needs it?
This would be a point that Hospice will ask about. If she has no one that can stay with her if they feel that it is not safe for her to be alone they can ask her to go to a facility where she will have 24/7 care of they can withdraw services.
She will have a Nurse that comes weekly, more often if needed. The Nurse will order all medical equipment, medical supplies, medications that are needed. These will all be delivered to her.
A CNA will come 2 times a week to help her with a bath or shower. (If she wishes, the CNA service can be declined) The CNA will also order any personal supplies that are needed. These supplies will all be delivered.
Also part of the Team that is assigned will be a Social Worker, a Chaplain. The Hospice may also have Therapies that can be provided like massage, music, pet. (these also can be declined)
A requirement of Medicare is that all Hospice must have Volunteers. So a Volunteer can be requested. A Volunteer might just sit with her and keep her company or a Volunteer can be requested to do light housework, or pick up groceries. Any number of things can be requested.
The Hospice should have a number that can be called 24/7 for ANY question. If it is necessary a Nurse can be sent out.
She can not call 911 unless it is authorized by the Hospice.
The goal of Hospice is to keep someone comfortable.
Generally that can be managed at home. If symptoms become such that it it not possible she can be transferred to an In Patient Unit that might be freestanding unit, some Hospice use a Hospital. As soon as symptoms are managed she would be transported back home.
She may be asked to sign a POLST. (might be known by other names in some States.
This is a document that is more detailed than a DNR as it goes into what measures she wants to be taken. It does include do not resuscitate as well as supplemental nutrition. (I will tell you that CPR probably would not work on your Aunt.)
Treat this Hospice Assessment just like any Medical appointment.
Listen, take notes and ask ALL the questions that pop into your head.
And frankly if you do not like the person that is doing the assessment and you still have questions there are other Hospice companies and there is nothing wrong about getting a second opinion but the person that is doing the assessment may not the nurse that your Aunt will be seeing.
After all this...if she decides that she does not like Hospice and the care that she is getting she can always withdraw from hospice and return to her previous doctors.
She could last a long time, how do they handle your hospice respite days? In a facility, in someone else's facility, where? Or do they provide 24 hour home care in those instances.
2. ask hospice if they have an in-unit hospice facility. Bigger ones - like Vitas & Compassus (I think they have a new name) - do and tends to be a free standing building within a health science center. Placement into one seems to be interdependent on the drugs & skilled care they need to administer. It will not be available to use as a NH substitute. Personally I don’t think Auntie will need this but it’s good info to know about options.
3. have Aunts funeral home details at the ready both for hospice to place in their files and for your family. Fwiw her being on hospice makes it easier for death certificate issued. Dying at home without hospice enrollment tends to mean coroners office involvement.
3b If going traditional burial route, go ahead and get her last wardrobe ready and into a hanging bag placed somewhere obvious. Write up her obit. Select photos for the “slide show” most FH nowadays have set up to show.
4. call FH and get the contact person details for your Aunts event and you as POA have a convo with them, eg discuss florals. They may have a set of paperwork to do (like authorization for entry into private home that the POA signs off on ahead of time-I think that’s you? - so you have to do this b4 you head back to MN) if it’s an at the home retrieval vs at the hospital.
On a side note, I don’t remember you ever mentioning military but if she will be placed in a national cemetery, likely will be a delay and the body stays at the FH. For my MIL, her cremains stayed at BIL house for not quite a yr till there others to go into national cemetery in Santa Fe where FIL was buried and has been “full”. Even Ft Sam - which still has openings - was taking abt 2 mos for all burials. FH are used to dealing with this somewhat awkward situation.
Your Auntie is a lovely but tough old bird. Could be on hospice for months or years. Like she goes into re-evaluation process that Medicare requires. If she makes it past first 6 weeks, the odds are she will be on hospice for a long time even at 105! (My mom was on hospice 18 months & at almost 100) If this is what it seems will be happening, hospice can provide lots of DME for her: bed w/pneumatic mattress (so less bedsores), transitional devices (lifts, those slidey seat things between bed and the porta bedside toilet, wheelchair, suction grab bars), floor mats, & if bedfast, shelf stable canned nutritionals designed for better digestive process. The bigger hospice, like Vitas, have DME at the ready to be delivered to a clients home. Don’t be shy on asking for all this, Medicare paying hospice about $4600 a mo. capitation rate.
Pls realize IF family cannot really truly provide 24/7 oversight required by Medicare for hospice, then hospice can flag her for SNF/NH placement. Imo cousins & their not being able to do nite duty will be an issue. You as POA may flat need to look at hiring an agency to do overnite duty. Personally I’d plan for this. She has SSA income she can use to pay. I think if y’all can cover first 6 weeks, you’ll have a better idea of IF her staying in her home and passing there is really truly feasible.
Remember to get your own rest too!
As it turns out, because my Aunt was sent to hospital that was different than her normal one (because it has a heart clinic) none of her recent ER medical test results were available. So between the Visiting RN Assessor and me, we were on our phones and laptops trying to organize getting her records to the appropriate places.
For now, she is stable and my goal today is to find an overnight caregiver and then fly back home for a while until the records are where they need to be. The assessor told me "off the record" that she should be a candidate for hospice but we have to go through the rigid hoops for it to happen.
Thanks so much for all the last-minute input -- it was invaluable!
So grateful for the collective support and wisdom (and humanity) of all *you people*! (wink)
Their intent now will be to keep your aunt as comfortable and pain free as possible, until she leaves this world for the next.
They should tell you all about what they will supply as far as equipment, supplies and medications, so if you have any questions about any of that...ask.
I would also ask if they have a hospice home that your aunt can go to in case her being at home gets to be too much for those looking after her there.
And I guess being that your aunt is 105, I would ask how often a nurse will be coming to check on her and how often aides will be coming to bathe your aunt, along with what else they have to offer, like volunteers, massage therapist, social worker, chaplain and the like.
I honestly can't imagine that hospice will be there for 2-3 hours as I remember when my late husband had his first hospice assessment it was only a little over an hour.
Best wishes in getting hospice set up for your aunt.
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