[Bernice]

The hospice nurse came today, we worked together, she was very sweet. But my mom is on a 5k a month med (actually the cheapest in the class of drugs for her disease) that a drug company grant pays the whole amount. The Medicare regs have gotten stiffer, hospice cannot deny services to a patient over expensive meds if they make the patient comfortable, even if by doing so, they may live longer. (the last month, they tried 1/2 the dose and OMG, she was gasping for air even when still, so she's back up to the dose that helps)

The nurse called the hospice doc and we spoke, she is very conservative and tends to see these meds as extending life so she declines the patient. Or makes the patient stop the med and she said if they did this to my mom, she would be gone in TWO weeks! Um, our mission statement says we will do nothing to hasten death, this would be hastening death for no reason except the cost of a drug. I reminded her the Medicare regs do not say that, they say the opposite. She was very nice, too and will advocate for my mom with the head honcho doc on Mon. She said he tends to allow these drugs. Well, duh, he kind of has to or they can be slammed by Medicare.

She is also going to check if Palliative Care (the step before hospice) takes her insurance (pretty sure they don't) and then the med would not be an issue. But that program, honestly, does not manage pain and breathing as aggressively as hospice so it would take lots of advocating to try to get her more comfortable. In all honesty, my mom is way sicker than Palliative Care services, she needs hospice.

My mom burst into tears with uncontrollable sobbing, she said she didn't realize how ready for hospice she is and never thought she would be denied. It broke my heart and made me cry but also made me very angry.

If we have to settle for Palliative Care, fine, but if they don't take her insurance and hospice won't take her, I'm appealing that. I don't care if this makes my old hospice hate me, my mom deserves a comfortable death, this is complete BS and is against Medicare regs. The part that irks me the most is I've had several patients with my mom's disease who were way more independent and functional and could breathe, who were on 24 hr/day IV versions of these drugs. easily 5-10x more than what they would have to pay for my mom. So they willy nilly take cases, it's just a roll of the dice which doc makes the decision and that's not fair or even allowed. There is no decision to be made, read the REGS!

The doc will call me Monday, I am praying for a "yes", if not I'm going to cite which Medicare regs they are not following (double and tripled checked them today) and that they can get in trouble with Medicare for refusing my mom over a med that keeps her comfortable. If she still says no, Medicare says my mom has the right to have a hospice doc come evaluate her, I will request that. They have to say yes to that, I mean all of this is in black and white in the regs. I, as a family member, should not have to be looking up regs and codes that they know they play fast and loose with to save money. I cannot imagine our doctor looking at her, talking to her, seeing how much she suffers, will turn around and deny her.

Lastly, I will appeal to Medicare, a total PITA. And I have to look, DOH might cover this, too and they are just looking for an excuse to get in. If someone makes a complaint to DOH, they are allowed to come in and address that BUT there is a loophole, once, in they can examine our hospices in 7 counties and look at whatever they want. This happens rarely and it is very hard on the company, however, if they won't follow very clear regs, I will pull that trigger.

All of my co-workers will hate me if I do this, management- I cannot even fathom the hate. And if my mom wins, she has to be cared for by an agency that hates me!

this could be worse but it's too close for comfort. I pray and pray they decide to admit her Mon. I do not want to have to fight and appeal, but I will, that's my mom, she is suffering and Hospice walked right back out the door, knowing they had made her whole situation worse and since they didn't take her, she didn't get hospice pain or breathing management. My dad was furious about that, as am I. My dad has been a volunteer there for 7 years. He can make it rain, too when regs are outright ignored.

I'm always asking for prayers, one more? Please pray she gets hospice Mon with no fighting back and forth and that they manage her pain and breathing. It is the worst feeling in the world to have dedicated ten yrs of my life breaking my butt to make sure patients didn't suffer even one hour needlessly, only to be completely unable to help my own mother.

 

[daylily]

How frustrating for you and your family. I will be praying for you and your Mom andthe whole situation.

 

[ilovechocolate]

Oh Bernice, why oh why would they be trying this with you, of all people?! You have to do what is best for your mom, and if that involves calling in the big guns, then you must do it.

Praying that Monday will bring very positive news.

 

[Bernice]

the hospice doc called, the case was reviewed, the only thing keeping her from hospice is they claim her specialist did not say she has a very specific form of PPH, which if she had (and probably does) hospice would've taken her and covered the med. She is devastated.

so the hospice doc suggested Palliative Care, fine, since we have no other option, but I found out one of our hospice docs runs the program. So she and the hospice doc will confer, come up with a plan to manage pain and breathing and once she is worse and ready to stop the expensive med, she can be smoothly transitioned to hospice.

I really don't think the hospice doc and her boss spoke and did not take my mom because of me. Her case is complicated and she would have to stop that med, stop getting IV diuretics, stop a shot for anemia, and dead in 2 weeks. So I have to change mind sets and really sell this program to make my mom feel better.

 

[Buckeye5]

prayers to you!! Hang in there!

 

[Bernice]

my mom keeps crying, she just cannot believe it or understand the rejection. I'm telling her it will be ok, Palliative Care is just as good. She called the hospice doc who rejected her because she needs to hear it for herself. She said, "so they will only take me when I am dying and agree to give up the only med that helps my breathing? So I will die gasping for air and full of fluid?" I told her to write that down and say it to the hospice doc, because that is the complete opposite of a "good" death to which everyone is entitled to according to Hospice. She's afraid she will cry on the phone, I told her that's fine, let them see how much this has upset her. I'm even angrier today.

 

[ilovechocolate]

Sometimes doctors have become hardened to all they deal with. Maybe it's a coping mechanism, but whatever, it's wrong. Doesn't the Hippocratic Oath say, "First, do no harm"? The hospice is harming her.

You are right to be angry. It's a disgraceful situation. And yes, your mom needs to say exactly those words to the doctor.

 

[Bernice]

I had appts all day so my mom was on her own. She called hospice at 8am saying she wanted to speak to the doc who made the hospice decision. I got home at 2p no one called her back. So I called and they had some QI nurse from the other city's team call her back. WTH? She doesn't even deal with patients. She just repeated what the doc said. I am so furious, I worked closely with that doc for 11 yrs, she said call back if we need to. And instead I get the Quality Improvement woman, a woman who just checks old charts all day. This makes zero sense and I am DONE with hospice. I do not even care anymore about the good work I did there. It's meaningless when they won't help one of their own's mom over money.

My mom did get her doc to refer her to the Palliative Care program that a hospice doc runs. Because supposedly they could easily transfer her to hospice, but for what? She will not give up the only med that helps her breathe at all, so she would not go to hospice until she can no longer ingest it. At that point, she will likely be out of it or close to it. The last thing she would need is all her PC helpers to leave and bring in strangers from hospice as she is dying. And if my mom is out of it and dying and the choice is up to me? I will not be calling hospice.

We have another option. A bunch of older hospice people went to the VNA and started a Palliative Care program. If we chose that company, she would have care from wonderful staff that I have known forever. She could still choose hospice at the very end, but why go with the other Palliative Care program just because they have a hospice doc? The VNA program brings in people I know do an excellent job. The only people at the other program I know is that hospice doc and I've maybe spoken to her once. I don't think I am willing to put all our eggs in their basket.

With thought, I have changed my mind and now have to try to change my mom's. She worries about what people think about her way too much. She will not want to bother her doc to make yet another referral and fax all the paperwork. Maybe I'll just talk to her primary tomorrow and see what she thinks. This is all such BS. It's a game, a game about money that I failed to believe in the years I worked at hospice. In the end, it's like every other company, the almighty dollar rules.

 

[ilovechocolate]

Bernice, you have to do for your mom what she can't do for herself. Prayers and hugs going to you.

 

[oheoh's momma]

Bernice this is a hard situation. . U are so stuck.. I hope they do what is best... praying for your family

 

[Bernice]

The director of the VNA Palliative Care program was my director at hospice for years. We weren't close, she was rarely around, but friendly. She called me from home today (she only works 2 days a week, she's getting up there), said she heard about my mom, especially her breathing and pain and gave me her word they will get this managed and give her the very best care possible. I was so thankful, I cried. Then the supervisor called me when she heard my mom is coming on, I worked with her for 11 yrs as a nurse, she is a kind person through and through. She was so comforting. And both of them said my mom could stay on through her dying if she did not want to go to hospice at the end and be denied the only med that helps her. They said their patients do that all the time, they get comfortable with the PC staff and thus don't choose hospice.

Once my mom is safely on the PC program, I feel like I need to tell someone of importance at hospice, how my mom was treated, that she could've come on like other PPH patients and hospice could have taken her even though the medicare regs said they did not have to pay for that med. They CHOSE not to and I will graphically describe the death she would have had on hospice without the only med that helps her. How that goes against every single thing we stand for, especially the part that says we do not hasten death or prolong it. They sure were ready to hasten my mother's death by stating she could come on without the med and that would cause a very uncomfortable death in 2 weeks. None of any of what happened with my mom had to happen. And someone up in the food chain needs to be made aware of what happened.

I have to sleep on this, too. Because part of me just wants to write a letter to our CEO, another part wants to call DOH and let the chips fall where they land. I have to think long and hard before I burn this bridge so badly.

 

[ilovechocolate]

Yes, sleep on it. You don't want to do anything rash that may backfire someday. But sending a factual yet strongly-worded report of what was done to your mom is needed to keep it from happening to someone else.

You don't have to do it immediately. You have enough on your plate as it is. It's okay to wait till things are settled with your mom.

 

[LongTimeLurker]

I would find someone else to handle this...you have said that you have days when you don't remember to eat or if it's day or night...if thats the case, there is no way you can handle being an advocate. That could end badly for your mom's future care if things are forgotten or worse, inaccurate info is conveyed.

 

[Bernice]

that is true and if I overact, I may get a reputation in the medical field beyond the company I worked for and no one will hire me. When I woke up today, I had already completely forgotten the order in which the events happened, I was confused and actually needed a refresher on the timeline. I knew what the hospice doc had said but that may be gone by tomorrow or details of it confused in my head. I could never speak to anyone involved in this face to face and be effective, unless I had detailed notes. Which I don't because I still stupidly believe of course I will remember the big things. And I do, but not in totality and in a face to face discussion with someone it would be obvious things are not quite right upstairs. I can write a narrative but cannot find the words to speak one coherently.

I need to talk to my BFF, she is a very good lawyer, the person assigned to be my advocate. I suspect she will say do nothing and do not talk to the VNA staff about our hospice experience. She keeps me in check. If I complain to DOH, that is going to get around and could affect my future career (supposing I have one) very negatively. And a letter to the CEO, is that really going to change anything? No. I'm just very angry, very disappointed and honestly feel like this happening puts a negative spin on an 11 yr career in a place I felt I had finally found my niche and did my best work. It feels meaningless to me now, but that's an emotional response. Intellectually, I know this is not valid, that I did good work and I advocated for my mom the very best that I could.

I think my BFF is going to say exactly that and I should let it end right there. And over time, I think my belief in how we should care for our dying and that hospice usually does this very well, will come back. Just not this week, lol.

 

[Bernice]

And this battle would just be an energy suck, that one person vs a large company can possibly "win" is not very likely to happen. I need to make sure my mom's breathing and pain are relieved. And then I really have to focus on my stuff that I keep putting off because it feels overwhelming, confusing and hard. Well, letting massive amounts of time go by certainly is not making this any easier so I need to get a move on.