I know I must sound like a blithering idiot, but I can't seem to find a consensus anywhere online...
Can your LO still go to the doctor once they're on hospice? The dentist? The podiatrist? I know you agree to forgo life extending treatment, but does that mean no more doctor visits?
I would talk to multiple ones before you make a final decision on who to go with.
I had no idea that once on hospice, they expect someone with the patient 24/7! I wonder what they do about someone who lives alone at home with no support system in place, or a family where the caregiver has no choice but to go to work, and the person who needs care makes too much to qualify for medicaid but can't afford to pay out of pocket? Do people in that situation not get the benefits of hospice? That would be really terrible.
The only experience I have with hospice was my grandfather who died many, many years ago, when I was a little girl. He had lived for years paralyzed on one side from a stroke, then developed cancer. He was actually cared for in a hospice facility. I remember going to visit once or twice, and I have vague recollections of a very dismal facility. I'm sure my memories are very faulty. Other than that, my FIL had hospice briefly for a few days in the hospital before he passed away.
I'm hoping to get some answers from her cardiologist on Friday. I'm a little irked that this is turning into such a ****show. I had been under the impression that this IV infusion was going to be a 1/week sort of thing, not a continuous drip, and I guess it's shame on me for not asking much more detailed questions. Every day, it seems, is like another little lesson about the process of dying, and I'm weary. I am weary to my very soul. And it's not anything my mom is doing - honestly, she's a delightfully easy patient with the exception of a few idiosyncrasies that we're all entitled to, and I have a wonderful support system with my family - truly, I consider myself to be very lucky - but this is sapping the strength from me, little by little.
And now I'm laughing at my puppy, who was trying to get her ball out from under the couch unsuccessfully, and has fallen asleep with her snoot under the couch. I think I needed that.
Let me tell you what my "bright line" was.
Mom got sent to the hospital for something, pneumonia, maybe a UTI. She was totally out of it, they didn't have the anti-anxiety med she was usually on, so they switched her to something else. She would wake up occasionally and point at the white board in the hospital room and weep and wring her hands.
On the day she was to be discharged, she was lying in her hospital bed in a fetal position, totally non responsive. The nurse came in with the discharge papers and I was apparently looking distraught. She said to me "this isn't your mom's usual state?".
I realized at that moment that a. No hospital visit was ever going to make mom any better and that b. we were going one step forward and 10 steps back.
I couldn't talk my POA brother into hospice, but we were able to put palliative care into place. Thus, the NH had orders from all of us to treat what they could but NOT transport her to the ER without our explicit consent. It worked pretty well; the NH treated her "in house" for pneumonia, UTIs and the like. At the end, she had a fall and NH was required by law to get her examined at the ER. We put her on hospice upon her return.
I think it's a LOT harder when the person is at home and still functioning in a sort of independent way, propped up by family. These are terribly hard decisions to make, and I totally empathize with your wanting for your mom not to needlessly suffer any longer.
It is also a myth that you get no treatment. You get treatment for bedsore. If you get pneumonia you get antibiotics. If you get a bladder infections you get antibiotics.
You are in comfort care. Pneumonia causes discomfort. So does a UTI. So does a bedsore. So you are given things that increase your comfort.
The basic way to think about it is that you will get a minimal of "testing" for things that honestly don't yet exist. No mammograms, colonoscopies, and etc. You would be very unlikely to have chemo. You might get radiation if you are getting it to shrink a tumor that is blocking something.
Discuss all this with the hospice providers you interview. Many people now stay in hospice long periods. One person on site recently had an elder in hospice for 2 years. Usually reassessed at every six months. Just occasionally you will not be allowed to stay in hospice after 6 months because you are too well, clearly not dying. It is federally paid for on medicare, and the rule is basically that your physician does recognize that you are dying. Whether of old age or of a specific disease the doctor thinks it is reasonable to guess you will not be here in 6 months.
I don't understand your comment about "county hospice". There are usually many hospice providers to chose from; you shouldn't be locked into one choice. I would question the nurse about what the choices are. ((((((hugs))))))))
My understanding is that you do not pursue medical treatment for things that extend life. Things that keep you comfortable are different. My LO still has her regular doctor, but, there is no treatment to extend her life. She has a hospice doctor too and nurse. Meds, like that for cholesterol were stopped, but, those for GERD continue for her comfort. To be on the safe side, the MC staff will call me and hospice before taking my LO to ER. So, no IVs, no CPR, no more tests. I'd ask the hospice you are considering. They should provide you with their policy in writing. Signing up with hospice doesn't mean that the person will die soon. My LO has been on hospice for over 18 months. When we signed on, I thought she wouldn't last any more than a couple of months.
Mom has end stage CHF. She is currently in the hospital. They are installing a PICC line today, so she an receive a continuous milrinone drip. Her cardiologist was very specific that is was not to prolong life, but rather improve her quality of life.
I keep getting different messages from the doctors, even those in the same practice. But the one consensus they have reached is there will be no improvement for my mom's heart, it's just too weak.
The palliative care nurse from the hospital called me to discuss things. (The other fly in the ointment is my mom is currently in a hospital in a different county than where we reside, and the different hospices allow different things). She is going to give my county hospice a call and refer me to them, along with my mom's medical records. I am making a list of all the questions as they come to me.
And I know I should just call myself. But I'm scared. I will freely admit I am more scared about this than my mom is. And the hell of it is, I don't know if I'm more scared that she will be a candidate or that she won't be a candidate. And I know that, logically, a phone call doesn't lock us into anything, but logic is not really playing a big part in what's going on now. To look at my mom, to talk to her, if you didn't know her you would never realize there was anything wrong. Even her doctors/nurses have expressed amazement at how well she's doing considering how weak her heart is...when she had an ejection fraction of less than 15% she was still able to walk into the doctor's office under her own power. Maybe that's part of the problem I have - if she was bedridden, the decision would probably be clearer...
No it doesn't mean no more doctor visits (though I'm sure Barb is also right, that what is and isn't permissible will vary from provider to provider - read the small print and if still in doubt ring them up and ask about specific instances). The line to be drawn will wiggle and blur, but in general terms the distinction is between treatment aimed at prolonging life, and treatment aimed at improving the patient's quality of life.
Just to take a (very) random example - suppose your mother picked up ringworm from a visitor - yes, she'd still need treatment, and yes, she'd still be eligible for it. She might be dying but there'd be absolutely no need for her to endure an unpleasant and eminently curable condition as well!
Is there anything going on that's a particular worry at the moment?
What hospice DOES mean is that they won't treat your mom's primary problem in a curative way. Which I believe is CHF. And her cardio wants to put in a port? For meds? Will those be allowable under hospice as comfort care?
Will they treat a UTI? Pneumonia? If you want mom taken to the ER for acute treatment, you need to notify hospice that you want to discontinue their service before she can go.
As noted before, dentistry is private pay, so that's really not a hospice issue. I have not idea about podiatry, but that seems like a quality of life issue.
Is mom at home or in a facility?
The thing to do, in our situation at least, was to meet with more than one hospice provider and ask LOTS of questions before you get to the "oh my God she's dying, we need hospice". We were fortunate that we were able to meet with the NH's preferred hospice provider after a pretty serious bout of pneumonia and got our ducks in a row. Mom recovered, but we knew who we were going to call the next time she "dipped".
Don't let the "what ifs" prevent you from getting a hospice evaluation so that you can ask the questions. Don't make assumptions or let your mother make assumptions based on "what Dorothy told me". Talk to the organizations themselves, see what services they offer and what is allowable and doable or not. It's a little like shopping for a car; as long and you make a promise to yourself that you're not going to buy the first car you see and that you're going to sleep on your decision to buy, you get to do all the shopping you want to.
I would call Medicare and ask them how they handle the payments for services that are not inclusive in hospice. This is going to help you understand what she may be financially responsible for if it is not included in hospice.
They may actually have a podiatrist that can come see her.
A dentist isn't covered by Medicare anyway. But does she really need to see a dentist if she is on hospice?
Deciding what medical services are still required is something that your hospice team should be able to help you with. And maybe hospice isn't the solution right now.