The skies have been sobbing for several months. Gray clouds, torrents of tears, occasional peaks of sun, more torrents of tears. The rivers are overflowing, thick brown mud churning as the waters make their serpentine path through this beautiful area. This is southwestern Virginia in a climate-change spring and summertime. While skies are gray and rivers are brown, everything else is green, green, green. It’s beautiful, if you’re in the mood, you don’t think too much about the doom of ignoring climate accords, and you don’t have arthritis.
I’m a bit of a “torrents of tears” person. I’ve always cried easily—at sad stories, sentimental moments, and hilarious events. The tears just flow. I used to apologize for them but eventually learned not to. Now I just keep tissues nearby. At this point, too, after having plugs literally placed in my eyes’ tear ducts to slow corneal erosion, tears are always welled in my eyes, just physically sitting there to maintain the health of the windows to the soul. I also use dozens of small vials of artificial tears each week, just in case my own natural sentimentality and plugged tear ducts aren’t enough. So, yes, it’s raining, and so am I.
Over the last several days, I have sat with my father and brothers in my mother’s hospital room in the ICU. While the notion and reality of tears and sobbing play a part in this context, my focus here is not on my own or my family’s worry and sorrow. I’m writing today to sort through, in a preliminary way, what there is to cry about as we consider our health systems. I’m concerned about three main factors: decentralization of care, poor communication, and high costs. The comments I make here are quite apart from my support for the Affordable Care Act, which still makes the most sense for most people in the United States. (*See this post to learn more about my support for the ACA and opposition to the AHCA.)
Deep knowledge about and experience in treating specific conditions are important. We need nurses, nurse practitioners, physician assistants, and doctors to specialize in treating specific systems and parts of the body and specific illnesses and ailments. I don’t argue at all with specialization, but I am concerned that an extreme focus on specialization has made us forget about the whole person who becomes the medical (and “medicalized”) subject. There are excellent medical personnel who are working long hours to take outstanding care of patients. The complexity of the job they do must be much greater than I can imagine, as they combine intellectual smarts, physical skill and stamina, and emotional intelligence. They interact with many patients (more and more, as pushed by a healthcare system overly hungry for greater profit), their co-workers, the insurance companies, their internal and external IT systems, and the pharmaceutical companies. A gigantic population of the aging introduces even more needs and ethical considerations in the healthcare realm. All the while, medical personnel are trying to take care of real, live human beings who are complicated bundles of the physical, emotional, and intellectual. They’re also dealing with the families of their patients. It sounds close to impossible to manage it all, doesn’t it? But they do it, and they keep up the pace, and I respect this.
One significant problem, nevertheless, is the decentralization of patient care. From the patient and her family’s perspective, a medical emergency brings a foreign environment (the hospital, with its weird beds, beeping machines, loud entrances and exits, and frequent interruptions of rest and recovery), a host of visits from dozens of medical practitioners (the ones I listed above, plus the people who take meal orders, clean the rooms, and check on insurance policies), and a bewildering stream of disconnected explanations of the patient’s state (platelets here, crackly lungs there, the unexplained threat of “interventions,” whatever they are). Oftentimes, the general practitioner, or primary care physician, is nowhere on the scene (busy as he or she may be with the hectic day-to-day of office and clinic visits). This leaves the interpretation of the multiple explanations and medical pokes, prods, and procedures to the surrounding family members, who are often taking turns being in the room to nurture their loved one and understand the medical messages. It ends up feeling like the patient who has a neurologist, cardiologist, ophthalmologist, oncologist, and hematologist becomes just a line item for each of these specialists, who is doing her or his darnedest to take good care of the patient, but who often seems unaware of the other doctors’ movements. In fact, my mother just spent three days in the hospital before being able to communicate to a medical staff member that she really wanted and needed her teeth brushed. The little things for a patient’s care and daily well-being also matter and can be easily overlooked.
In my own case, I have a primary care physician who is wonderful. Nevertheless, when I went to her to try to understand the big picture of my health (which doctors to trust; when to get a second opinion; how a drug for one chronic condition affects a different chronic condition; how certain forms of exercise are of harm or benefit; etc.), she asked quite bluntly (which I appreciated), “What do you want me to do?” I heard myself answer, “Well, it would be great if you were to centralize my care.” And that’s when I realized that the only people really centralizing care at this point are the patients themselves. I realized, too, that this enormous burden, which I believe is a significant outcrop of the medical industry’s attempt to protect itself from risk, has dire implications for patients’ mental well-being.
The decentralization of care connects profoundly to the communication problems in the medical industry. People who feel well could easily find it hard to track which doctor does what and why, and so imagine the increased difficulties for people who don’t feel well. Most medical personnel do introduce themselves and identify their roles, but they frequently do not give an explanation for why they are poking, prodding, pouring, or popping. It is even rarer for an explanation to be linked to the previous ministrations done to a patient. While there are still many, many nurses and doctors who look at and really see the whole person/patient, many others are distracted by entering data into computers whose screens become the focus of attention. They mumble to a screen, ask rapid-fire questions whose responses they don’t seem to register, and sometimes even ask why the patient is undertaking a course of treatment prescribed by that very doctor! Sometimes they don’t even touch a patient, which certainly contradicts best practices from non-western medical traditions.
Some doctors charge patients for a missed or changed appointment, but the patient receives no recompense or reassurance when the doctor’s office changes or cancels an appointment. Patients also often have to describe their symptoms on one single visit to numerous medical personnel, leading patients to believe that no one is actually listening. One of my own sources of frustration is the perennial update of the medications list. I bring an updated list to any doctor I ever go to, but the list is never updated by the next time I visit. If this small example is extrapolated to the realm of urgent care, then we should have profound concerns about who is aware of a patient’s whole self and well-being. Who is taking care of this communication? Do they understand the uneasiness that poor communication sows? Again, I believe the stresses on medical personnel are enormous, and so I am blaming the system, not its employees.
Not unlike the argument I made about the airlines in the “Who’s Sorry” post, I believe that many of the people on the frontlines of patients’ frustration with the big system are women—nurses, nurse practitioners, nurse aides, and insurance billing personnel. While 2016 statistics show that CEOs of the biggest healthcare businesses (with pharmaceutical and insurance companies appearing to earn more than hospitals) are mostly men (the people on this list named Jody, Kelby, and Kerry are also men), we know the large majority of nurses and nurse aides to be women (here are old 2003 Bureau of Labor statistics that provide statistics on men and women nurses, African-American nurses, and Asian nurses in the United States; these 2015 statistics from Becker’s Hospital Review sort only by women-men). Again, the people managing the healthcare industry and earning astronomical yearly salaries (in the tens of millions) are not the people dealing with the day-to-day frustrations of the problematic industry from which the ones in charge profit so greatly.
An additional obvious element of healthcare costs is the impact they have on patients. (Here’s a useful link from the Kaiser Family Foundation about costs in the healthcare industry.) High premiums and deductibles, reduced employer contributions, decreased job mobility due to limits on pre-existing conditions, and high hospital and drug costs all contribute to a health system that is suffering from extreme ill health. We need leaders who are willing to have broad and open conversations about the gray clouds and storms of our nation’s healthcare industry.