My experiences with health care are growing exponentially as I continue to battle cancer. I feel my thoughts are pretty standard. To sum it up, I’ve met some of the most kind and caring people while being in and out of clinics and hospitals. Health care workers are generally really good people and I can’t say enough good things about my experiences with the people themselves. The health care system, however, needs some work.
I realize many of the reasons why certain things have to happen. I get why insurance companies can’t just pay for anything and everything without going through some prior authorizations and other paperwork first. I understand some of the seemingly pointless double checks and verifications that occur for patient safety. I understand that hospital billing is crazy in part because not everyone carries their fair share of the responsibility. Healthcare is an ethical business and one that is dominated by insurance companies. Hospitals can’t turn people away who can’t pay, but they also need to bring in money to pay their costs. This, coupled with low reimbursement rates by insurance companies all contribute to a ridiculous bill. I understand all of this and I think this definitely can be improved upon, but I also think it is really complicated. While it’s tempting to place blame on evil insurance or mismanaged healthcare, we should realize that we need successful collaboration by these entities. Our insurance companies need to cover their costs so they can keep providing us insurance. There are very few of us that could safely say we have enough money stockpiled away to cover medical costs without insurance. Hospitals are expected to do even more. They need to not only cover their costs, but more importantly to take care of patients. I think any cost cutting attempts in healthcare are much more difficult and heavily scrutinized than other businesses because of the ethical implications and high expectations of care.
What really frustrates me and I think a lot of other folks is the lack of what I would call a “common sense” factor in healthcare. I have a few examples of this. My health care facility does a pretty thorough check of my insurance coverage before scheduling a high cost procedure (examples surgery, scans). On two separate occasions I have had a procedure and then a few days later gotten a letter from my insurance saying the procedure wasn’t covered. In both situations, the letter was wrong and sent out before the proper paperwork was filled out by the doctor. But, really, does this need to happen? I feel like this is a situation where the insurance company knows there’s a good chance the procedure will be covered. Certainly, getting a letter like that after a necessary procedure is alarming and can cause unnecessary anxiety, phone calls, and conversations.
Another frustration for me has been miscommunication between health care providers. Three years ago, when my primary provider initially discovered the lump in the breast and recommended a mammogram and ultrasound, I had difficulty scheduling the imaging tests. I was told to call the imaging center that my clinic worked with to schedule a mammogram and ultrasound. When I called the clinic, I was asked why I wanted to schedule a mammogram. They did not have an order from my provider and thought I was crazy trying to schedule a mammogram at the young age of 35. As it turned out, they never received the FAX from my provider. The fax. I know electronic records in the health care industry are alive and well. I still do not understand why my diagnosis of breast cancer hinged on a fax.
I will never forget the moment I was told that my so-called pre-cancer was actually cancer that had spread to my lymph nodes. I was driving to pick up my son from day care. It seems there was some confusion about who was responsible for telling me the news (I didn’t have an oncologist at this point, “because it wasn’t cancer yet”), so a physician assistant to the surgeon who performed my mastectomy was the lucky candidate. To make matters worse, she seemed confused by the pathology report, so she wasn’t even very confident in what she was telling me (again while I was driving). In the movies, they make out these scenes to be this big important life moment with the doctor sitting behind a large, mahogany desk and the patient surrounded by loved ones. I have never seen one of these desks or fancy offices. All of the news I have received has either been via phone (usually while I’m driving or the kids are screaming at each other) or alone in a depressing exam room.
Another point of irritation is all of the protocols created to avoid the mistakes that, to be honest, are just ridiculous. Every time I go to the hospital now or have any kind of test done, I’m asked my name and birthdate no less than 10 times. This is not an exaggeration. This is in addition to scanning the bracelet in my wrist every five minutes. I understand the importance of this. I’ve witnessed people getting the wrong medication at the pharmacy because someone didn’t do due diligence in verifying the person’s identity. But, it’s gotten ridiculous. I’m usually fairly relaxed in medical settings, but this constant repeating of my information even puts me on edge and frankly I think it’s so overdone that no one even listens to what you are saying. So much emphasis is put on making entries in the computer and scanning every person and piece of equipment in a 20-foot radius, I feel it really takes away from the healthcare interaction. Sure, the doctor swoops in and makes eye contact for the 5-minute briefing they give you. But, the poor nurses are like robot zombies, just trying to get all of the information scanned and entered.
Events like these are unfortunately not unique to me. I know a lot of time and money is being spent trying to improve these types of issues. If I had more ambition and more of a roadmap in my head as to how to go about fixing these things, I would devote more energy into the matter. But, as it stands, I think these problems are just going to be carried on my sons’ generation to solve.
My Life with Stage IV Breast Cancer 
As one of the few lucky ones who get to see you every day, I wanted to let you know what a blessing it is to know you and be inspired by you. It is such a privilege to get to see into these thoughts that you are unable to express in person due to lack of time and emotional expense. Turns out you are quite the writer!
As difficult as it is to watch you go through this, I do find comfort in knowing that Jesus has you. I don’t know what this specifically means day to day or how it shows up, and I’m sure this is not “enough” for you all the time. Sometimes I think that it is a good thing that we don’t know the exact plan He has for us (don’t eat the fruit, right?), or we might not live life at all. This is, of course, much easier to say from a comfortable distance, so my prayer for you is to feel Jesus’ presence every day, find His strength in your weakness, and find His ability in your inability.
I was struck by the comment of your lack of roadmap or ambition to make a change to the current healthcare landscape…I have had this exact same thought often, perhaps never more so then when I decided to walk away from retail pharmacy. It is a very difficult feeling to articulate, although you did it very well. I did feel I was making a difference in people’s lives, but more often, I felt myself merely a cog in the giant wheel that is the healthcare machine in this country. I was, and still am, unable to pinpoint exactly what is wrong and how to fix it, and I suppose I lacked the courage and fortitude to dig any deeper or make a change. Indeed it may be up to your sons’ and my daughters’ generation to sort this thing out.
Thanks Katie!…………………………………….see you Monday
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