Deborah –Thank you for taking the time to capture so many of the issues affecting medical costs. It’s clear you understand that this problem will take consumer engagement, education, and involvement of everyone in the health care system to make lasting changes.

You mention research and education as ways to control costs, and that they can sometimes be time-consuming for patients. We recently launched a new capability on our member website that allows BCBSNC customers to search a number of procedures at different facilities, and compare cost estimates. These estimates are a starting point that empowers patients with more information previously unavailable. They can also discuss these estimates with their physicians so they can make more informed choices. I invite you to learn more about this, you can find an informational video here: http://www.bcbsnc.com/content/campaigns/mycost/index.htm?cmpid=mycost

How can we collaborate to better educate customers about how to make informed decisions about the quality and cost of their health care?

Thanks, Grayum. We found the link here if others are interested in reading. How can a patient’s health care experience be measured so that the metric is meaningful and does not increase costs?

Several comments interest me. I did read the article Grayum noted, and I'd like to think that most patients aren't so stupid that they'd fill out their satisfaction form and rate their stay at the hospital in a negative way because they experienced pain or had too many tests while being treated. (I apologize for the huge font, I'm not yelling, I just don't know how to reduce the size). They should however, be dissatisfied when they experience extreme pain, behavior change and altered mental status because the hospital pharmacy doesn't listen, and decide on their own to substitute two "equivalent" medications for a specific name brand blood pressure medication they were told by the patient and family could NOT be substituted - because other b/p medications caused Tegretol levels to build up in the her system causing those symptoms which are life threatening. The family had asked if they could bring her b/p meds to the pharmacy, but were told "no"; and when the pharmacy didn't have it, they made the substitution; when the error was caught after three days of worsening symptoms they asked the family to bring her meds from home. THAT requires a negative report on a survey form, whereas had this error not occurred she would have a positive report for her back surgery even though there had been pain and tests done.

Which leads me to my next real life experience, medication costs in hospitals and nursing homes. Why can't we take our already paid for medications to the hospitals instead of having to use their higher cost medications, and risk mix-ups like my friend's? Why can't we have the option of getting meds at a pharmacy and providing them to a nursing facility so they cost less? Why can't we medicate our family members, the ones we were intimately caring for the day before we turned them over to the facility, to reduce costs, and frankly in many cases provide them with better care (I'm just saying that when I have a UTI it doesn't take 7-10 days to get MY meds; or when I need pain meds I don't have to beg some little twit to please bring it to me and have her tell me there are still five minutes before the next dose)? I saw the Medicare/Medicaid bills that came from the hospitals and nursing facilities and how much was charged for medications, and it was more than we paid on the "outside." I watched dignified, sweet, elderly people suffer in pain or have prolonged infections, even die as the result of delayed care, because family and friends had to give up their ability to oversee the details once the person was turned over to a care facility. So IF a family wants, why can't we continue the detailed care, like taking care of the meds with their regular doctors, while they are in a care home? It could reduce costs, it may create some problems, but I'll bet it'll lower the negative answers on satisfaction forms and the number of negative calls to Ombudsmen about nursing home care will go way down because most of us who finally give in to a care facility do so reluctantly and only want it for "watching" their person, but balk at the takeover of the medical care.

Then there's the issue of asking questions about cost. I specifically called one time to question an extraordinary charge to Medicare for a doctor who literally stuck his head into an ER room one night to tell us he was the ortho surgeon on call and IF my mother in law needed surgery they would let him know. The billing lady at his office said that was the "Usual charge for his services and Medicare specified the code and charge," so there was nothing she could do about it. She admitted it was a lot, but said it off set the times when Medicare only paid a percentage of the costs for other expensive services, "so it all works out in the end." After that I quit looking at bills and trying to question anything.

You all have good ideas but there are so many variables to these situations. When you or the person you are caring for has a chronic medical situation that is complicated, requiring long term caregiving, even if you are educated, attempting to keep informed on everything you need to about medical care is an absolute nightmare. To try to know if the doctors, medications, procedures, tests, hospitals, facilities are all the most cost effective becomes one of the lessor cares you have, after appointments, coordinating travel, filing claims, making sure everyone is paid, filling prescriptions, filling out paperwork for insurance or doctors or facilities or claims or PAPs, or talking to family members or doctors or facility staff or nursing staff or lawyers or insurance people or sitting on hold, or just trying to survive.

A "regular" person who has been healthy, wealthy and wise their whole life shouldn't have much trouble with looking stuff up on the internet, comparing costs, talking to doctors and their insurance company about an upcoming procedure, making an informed decision, and having their stuff done. BUT, just like has been noted on another part of this site, even with the "cost estimator," you can do all that and still end up paying the same or more than BCBS "estimated" having gone to all that trouble and out of your home zone. So what's the point?

There's a lot that needs to be talked over with each other, including the part about why we were encouraged to have my mother in law's leg amputated (she'd had a blood clot) when she was 89 years old and was in the later stages of Alzheimer's. The doctor told them she'd be able to return home, staying on her own during the day just like she'd been doing before - Hello, she had Alzheimer's. It cost thousands and thousands in Medicare, Medicaid and VA coverage the next two years to care for her in a nursing facility; she was miserable; we were miserable; the benefits were iffy.

Or there's the situation of my Mom who had an accident leaving her a quad, she gets rehab to strengthen her body, but the rehab stops when she "can no longer make progress," and her situation declines because there's no coverage to keep her body, mind, muscles from getting worse; so she can no longer feed herself, or blow her nose, wipe her eyes, push a button, use a touch computer screen.

There's the 28 year old quad at the nursing facility across from my mother in law, he'd been there 12 years, unable to move from his neck down and had to use a sip and puff device for the call button, and the aides got irritated because he'd call too often to ask for more water just to have someone come into his room to talk to him; he laid on his back, all day, every day, alone, except Sunday when he was taken to church, because his family didn't have the resources for him to be at home. He died two years ago at 30, still stuck in that room, because of pressure sores.

That's the same thing that eventually caused the death of my mother in law, a pressure sore on her big toe, a stupid reason to die after all her triumphs over bronchitis, pneumonia, blood clots, amputation, broken knee bone, massive bruising from a fall, a stroke that paralyzed her right side - she died of a pressure sore because the understaffed nursing facility aides wouldn't, or didn't get the point of our instructions of how to seat her in a chair each day. That's what will one day take my mom, because she'll eventually be in a facility where she will not get the picky kind of hands on care she needs and she will get a bed sore, it won't heal, she'll get staph infection, she's already becoming antibiotic resistant, and she'll die.

I visited across the nursing home hall in a room with a lovely, kind, sweet lady who was so frail that sometimes just adjusting her in the bed would break a bone. She had severe arthritis her whole life. It had taken her hearing as a child, so she read lips. She watched the clock all day because it let her know what would come next. She had intense pain all day all the time. She'd lived with pain her entire life, and until she had come to that facility had been able to take her medications when SHE needed them to control her pain. But many times I sat trying to distract her with conversation because the aides would ignore her calls, and knowing that she couldn't hear them in the hallways they would joke about the fact that she wouldn't be getting anything from them until THEY felt like giving it to her.

You have no idea how furious all the years of these experiences have made me - toward all of it - while at the same time there have been amazingly kind doctors, aides, nurses, claims representatives, pharmacists, social workers who have gone way, way beyond their official area to help, encourage, share, mentor.

Thanks for giving a place to start the discussion that we all need to have on these issues.

Mayur, these are great ideas. This is the direction health care is heading, and patients will continue to increase demands for more information like you have outlined. We’re reviewing and sharing the ideas we see on Let’s Talk Cost, so we appreciate hearing them. Keep them coming!

your post is difficult/sad to read, deborah, but thanks for sharing these experiences.