Need checklist for questions to ask doctor for recent decline. Any suggestions?

Sunny, somehow I missed this question and apologize for not responding with any suggestions. After reading the posts just now, I'm not sure I could offer anything except a clarification on why hospice is recommended, and more specifically, what exactly is her condition and how have the recent symptoms indicated that hospice is appropriate.

Alternately, what are other steps that can be taken, and how effective would they be, and for an approximate period of time, i.e., are they just "bandaid" treatments?

I'm so sorry to learn that she's having such a difficult time. I hope you get some clarification, but if you don't, are there other doctors you can ask? Is the doctor you're seeing (today?) a doctor for the facility who rounds there, or one of your team of outside doctors?

Once your loved one is on Hospice Care you need to call them before going to ER or any medical facility. Generally you will have to withdraw her from the program and rejoin later in order for the ER or other visit to be paid for. Hospice is a Medicare program, funded differently than regular Medicare, and you can't use both programs at the same time. Hospice assumes your LO would be taken care of in her home (or NH, etc) and that outside care will not be needed. There can be exceptions if the outside visit is needed for COMFORT and the service cannot be performed by the hospice staff. Here is an example of the kind of things Hospice can do. Coy absolutely loved having a hospital bed but he told the nurse on her visit that the mattress seemed kind of thin. She had an egg crate mattress cover delivered that afternoon and Coy was very pleased. One morning Coy was very uncomfortable and looked terrible. I had no idea what could be wrong but something had be done to restore his comfort. Alone, I would have called an ambulance. The hospice nurse came, poked around his belly a bit, and declared he probably need a catheter. She went out to her car and brought in a sterile catheter kit, installed it (if that is the correct term) and within minutes it was evident that that was the problem. When it was all over Coy thanked the nurse, which I considered sweet of a person dying from dementia.

If something came up that you would in the past have taken her to a doctor or the ER, would you want to take her now, when the doctors there is nothing more they can do for her underlying health issues? What would she want? Talk to the doctor about the routine visits she had used recently. Do any of them provide comfort? If she stopped having blood tests, would she feel any worse?

Good points Jeannegibbs. I see what you mean. I suppose that I will need to focus on things like her geri chair and mattress. I suppose there is one preventative med that she could come off of. And, I'm going to ask about therapy for her legs. Since, she's not using them anymore, what's to prevent contracture? I suppose that will happen with her arms too, as she's decreased the use of those.

It's a lot to consider. I hope the meeting will give me more piece of mind. I just want to keep her comfortable.
One more thing that I thought of.  What are the options for taking her to the ER for infections?  The ER doctors have suggested Hospice.  How is that handled differently? I'm trying to avoid having her transported by ambulance to the ER every few weeks to get blood tests, chest x-ray,  EKG (even though she's DNR) and IV fluids and antibiotics.  She is terrified, in pain and crying out. It seems so cruel.  I don't know the options.  Maybe, put her on a regular antibiotic?  I know that presents another set of problems though. 

I am so sorry that your loved one is declining. Watching that can be very stressful.

From my point of view, people in a nursing home with dementia are essentially getting palliative care. No one is expecting them to get better and no one is treating them to "cure" them. What would be different, do you think, if her care is officially labeled "palliative care." If your loved one were at home, one difference would be that she wouldn't have to go to medical appointments -- they'd come to her. But that is already the case for her, isn't it? And the downsize is that she isn't allowed to leave her home except for religious services. But it doesn't sound like that would matter to her -- or would it? I'd ask exactly how palliative care would be different from what she is getting now? And then I would ask how things would be different if she went on hospice care. My mother was on hospice in a nursing home. She got lots of extra attention, a geri chair, a special mattress to prevent bedsores. I truly think extra care from hospice enabled Mom to improve enough to be discharged from hospice. She lived two more years, in relative contentment.

My husband was on first palliative care and then hospice, in our home. I'm sure it depends on the individual patient and their medical history and whether they are home or in a care center and lots of other factors, but I really didn't see any benefit to it for my husband, and the rule about not leaving the house was ridiculously restrictive as far as I was concerned. Of course he wasn't well enough to go out much, but I did want to take advantage of any good days for short outings. That was in October, peak leaf color season, and I simply took him out, in his pajamas, to view a magnificent area that we'd done every year. I parked often and took pictures. He never got out of the car. That was against the rules but good for his spirit. And if anyone ever asked, I would explain that we were Druids and tree worship was part of our religious belief. :-)

I'm just sharing my own experiences, and not suggesting what your decision should be.

As to whether her PCP can be objective, I think you'll get a sense of that when he explains his reasoning. In most medical practices there are always patients leaving for one reason or another, and always new patients enrolling. I doubt many doctors worry seriously about losing income when a single patient leaves their practice.

I'm bumping my question up to see if others have thought of any other suggestions. I have gotten some PM's so THANK YOU all. You know who you are.

I am in this thing alone with my cousin. I have no one else to help or bounce ideas with. I know that here, others have gone there before.

THANK YOU!

I sent you a PM with link to a pdf from Australia that is a pamphlet with very comprehensive questions for palliative care.