Care is a relative term

The United States of America is suffering from a systemic health imbalance. This is not necessarily an issue of rich and poor so much as an issue of dollars versus sense. I have not seen Michael Moore’s film, siCKO, but I think I understand the reason why he made it.

As Americans, we expect a lot from ourselves. We view illness as a weakness that takes us out of the esteemed loop of productivity. Illness is not acceptable in our culture, but not because of the discomfort and suffering it brings. I think if you were to really probe most people, they would reveal their true belief: Whatever it is, you really need to just get over it and get on with whatever work it is you contribute to the country.

Our culture does not tolerate sickness. It is during serious illness that you are likely to find out who your true friends aren’t. People may ask how you are, but they don’t want to know. If you’ve had whatever it is for more than a month, those around you have already lost patience with it. Compassion is not what we do best as a society, at least, not in terms of managing illness, not even by those who practice medicine.

In the late 1990s, a large wave of Bosnian refugees was settling into life in the U.S. Bosnians lived comfortably before the war, and most had never known a life without socialized medicine. Despite the country’s other problems, the healthcare system was excellent. Many Bosnians fled to Germany during the war and received additional excellent medical care. I remember one woman who injured her shoulder about nine months after she arrived here. She was told that to avoid surgery, she needed physical therapy and to wear a sling for a month, but otherwise, she should go about her normal activities. A week into her problem, a Bosnian man she knew stopped by her office and said, “Ah, well…If we were back in Bosnia, you’d have pain medication and a month off of work with pay.” They both sighed and nodded silently with nostalgia. They understood what it meant to be treated like a patient instead of like a liability.

When my mom had surgery last week, I was surprised she was scheduled through the day surgery unit. The procedure is not uncommon, but it is quite intricate and invasive, and the recovery is slow and painful. My mother is 71 years old and she is not physically fit by any means. She suffered a transient ischemic attack a few months ago, otherwise known as a mini-stroke. She was kept in the hospital for about 20 hours and released when her vital signs appeared to be stable. No further observation was deemed appropriate. For a stroke. The ER bill was $5,000.

In the wake of that TIA, Mom tripped and fell in her living room, which lead to a rotator cuff tear. The tear worsened with time, and eventually required surgery. The surgeon looked at the MRI results and diagnosed the injury as being “significant.” He said that the joint needed extensive repair affecting several different areas of the joint.

Despite the serious nature of the surgery, the insurance company still felt there was no reason for my mother to be admitted to the hospital for an overnight stay. Instead, the hospital requires the patient to bring a designated caregiver. From the time the patient goes into the operating room, the caregiver is bombarded with instructions. Here is the beeper. You will be paged three times. The first time, you will go to Room B and meet with the surgeon who will review the results of the surgery. The second time, we will let you know that your loved one has been moved to the post-op room. The third time, you will pick up a call from the waiting room phone and receive instructions before you go into the recovery room to wait for your loved one to be discharged. Return the beeper after the third call.

Once in the recovery room, you sit with your loved one, but not to keep him or her company. Your role at this point is to get a crash course in nursing and post-operative care. You will be immersed in instructions and details coming from at least three people, who will fill your arms with illustrated handouts and bullet-point to-do lists. There is an assumption that as the person accompanying the patient, you are qualified and willing to provide this care.

I waited for my mom’s blood pressure to come up to a normal range and leafed through the papers. My head was swimming. So many do’s and don’ts. I had to get up to speed very quickly on the mechanics of a Stryker pain pump and familiarize myself with the steps for its removal, catheter and all. I had to review the steps for removing and replacing a sling, removing surgical dressings, cleaning the wound area, redressing it, and keeping it sanitary. I was expected to know how to apply a post-surgical icepack collar, how to sponge bathe the patient, monitor medication dosages and pain relief, ensure adequate fluid intake, and watch for signs of infection or blood pressure changes.

In addition, I had to figure out how to dress and undress the patient without jostling the immobilized arm. I was expected to know what foods she could tolerate and which would be problematic with the medications and side effects of anesthesia. I was somehow supposed to understand the mechanics of getting my mother in and out of the recliner, on and off the couch, in and out of bed, and to and from the toilet. I applied lotion to her arms and legs, and powder to her chest and breasts which were being rubbed red by the sling. I analyzed that problem and came up with a solution to pad the sling. I cleaned up vomit and blood and did laundry. I created a “breakaway barf bag” that hung on a TV tray and was rolled open in a way that prevented it from collapsing closed.

I received no training for any of this, only a pile of photocopies and some rushed verbal instructions amidst a whirlwind of recovery room activity. I have a master’s degree in Language, Literacy, and Culture, not nursing, and yet I was supposed to just know what to do once we pulled out of the hospital’s parking garage.

In between the patient care activities, I did all of the things one actually expects to do when helping a loved one after surgery. I made repeated trips to the pharmacy and the supermarket, as well as to the post office and various other errand-oriented locations. I made calls—to the doctor’s office, to my office, to my mother’s workplace, to the pharmacist, to my mom’s Internet Service Provider. I answered the phone and gave patient updates to those who needed the information. I opened mail, unwrapped plastic-bound magazines, and I cooked. I did more laundry. I washed dishes, cleaned the bathroom, changed the kitty litter, took out the trash and recycling, vacuumed, and mopped the floors. I fixed my mother’s computer and updated the software and virus scan utilities, a process that took hours and went very late into the night. These tasks were not at all problematic because I knew what I was supposed to do and any minor missteps would cause no harm. But hands-on patient care? Medical waste disposal? Catheter removal?

The care I gave my mother in the 72 hours following her surgery should have been happening in a hospital and tended to by professional nurses, LPNs, and med techs. What kind of ethical deficiency allows our medical system to operate this way? Who considers this to be an adequate level of care? How is it seen as safe to leave such intricate measures in the hands of an untrained family member? What happens to those patients who don’t have anyone to assist them in the days following surgery? Are they expected to just fend for themselves?

Our medical system and insurance companies have made it very expensive and difficult to access the care we need. Being insured does not guarantee that you’ll actually get sufficient medical attention. You will get whatever the doctor feels is least likely to be questioned or whatever the insurance company has determined is the most cost-effective treatment for the least amount of money possible.

My mother has insurance. In fact, she has very good coverage, plus AFLAC and a comprehensive prescription plan with flexible spending benefits. If this is what you get with insurance, then I want to know what the money we pay in premiums and copays is being used for. Those of us with insurance usually pay thousands of dollars per year for what we believe is enough coverage to ensure adequate care when we are sick. It appears, though, that our thousands of dollars are not being held for our rainy day, but rather for someone else’s opportunity to invest in the stock market.

Again, though, it’s not about the money. No, this is about the ethical considerations of healthcare. I want to know where those ethics went and why potential patient endangerment is considered a risk worth taking when weighed against the cost of providing a full course of necessary treatment. The people who make these decisions are obviously soulless, hollow beings. The fact that their decisions may be of no help to the patient are completely irrelevant because these people believe that policy should be dictated by statistics and not by the needs of sick people who pay hard earned money to buy insurance that will ultimately fail them.