Help for Healing

Bitter & Sweet, living daily with grief


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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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Brick Walls

Part Five

Thanks for all the comments and support. People get outraged when they hear what happens and the assumption is that something can be done about it. The reality is, probably nothing will ever happen to that doctor or that hospital. They will have to investigate because I filed a complaint, but the chances of anything actually changing or being done about it, are probably less than 2%. I’m not exaggerating.

Anyhow, I think I’m done with the day by day accounting. It’s just too depressing. So again, just a couple more highlights.

When you are admitted to a psych unit or facility, they take all of your belongings. Emily told us that the hospital finance person had approached her at least three times to tell her she needed to pay the thousand dollar deductible in order to be discharged. This upset her because she kept explaining to them that her purse had been taken so she didn’t have her credit card to give them.

Now understand, Spencer and I are having to sort out if Emily is comprehending things fully or not by this point. Did that really happen? Spencer handled this one. He called their insurance company and was told that of course that was not an appropriate procedure for the hospital. The insurance rep called the hospital and kept Spencer in on a three-way call. They got a hold of the woman directly and she verified that indeed, there was no misunderstanding. That is their protocol at the hospital. The conversation got pretty heated but the gist of it, was that this is NOT appropriate for three reasons:

1. Emily is not the primary insurance holder. Any conversations about deductibles or any other coverage questions should have gone through Spencer.
2. It is not normal procedure to trouble a patient about finances while they are currently still being treated.
3. It is just completely lacking in common sense when the patient happens to be having mental health issues and hasn’t even been coherent for 48 hours yet. Really??

Spencer made it clear as well that when his wife was discharged (which couldn’t be soon enough at this point) they would not be given a dime. He had been paying on his deductible all year, and the hospital would have to do what every other medical facility has to do. They bill the insurance, and then the patient pays the difference. That is just the norm and it absolutely makes logical sense. The finance person finally reluctantly agreed and then said she was hanging up because she thought the conversation was getting hostile.

Don’t even get me started with health insurance. I have heard so many ridiculous stories or experienced them myself that I could write another book just on that. Honestly, is there no common sense anymore? I have no idea if the insurance company will follow-up with that hospital, but if it were me, I would be extremely concerned to know that patients are being pressured while still in treatment. Let’s face it. People pay the money to get out of that hell hole. When the hospital finds out that the patient has already filled the deductible, what do you think the chances are that the hospital gives the money back to the patient? Now I don’t consider myself cynical or paranoid but let’s be honest. The hospital has probably ripped off thousands of patients. And oh yeah, let’s remember these are patients who also happen to be mentally unstable. That’s really special.

I recently got feedback that I can come across as bitter. I disagree. I also got the feedback that I seem angry, not bitter. There really is a difference. I am pissed off at the things I see. And I’m beyond enraged that I can’t seem to do a damn thing to help make it better. No matter how hard I try.


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What’s Important

Overall, things have been ok. I have fleeting moments of being tired of the routine. Every day doing the same things. Wishing I didn’t have to work so much. Feeling a little sorry for myself if the truth be told. Then some life event happens and I get a splash of cold water in my face. I remember how terribly lucky I am to be where I am at.

Last night, I found out that a family I love very, very much had their house broken into. Trashed just about everything. I was amazed and humbled at how they were dealing with it. Upset, but grateful they weren’t hurt. Upset, but knowing that material things can be replaced.

What’s awful is the things that can’t be replaced. You put all your important papers- from your entire life- in a firebox because you are so responsible and organized. Who would even think that someone might take it someday? Papers and memories that can’t be duplicated.

They haven’t left my mind. I keep picturing them trying to clean everything up. Closets ripped apart. Beds torn apart. Each room violated. I don’t want to go on and on becaue they will probably read this and I don’t want them to feel even worse (if that’s even possible). But just take a moment today and imagine what that would feel like.

And say some prayers for them. Trying to make a list of everything you think has been stolen for the police and the insurance is probably maddening. And you know that for months they will be discovering more things that are missing.

So today I am grateful for my boring routine. I will be praying for them that someday soon they will regain some feeling again of routine and normal. Prayers to them for peace, safety, healing. Join me in those prayers if you can.