This week, I found myself locking horns with two intractable systems that are among the least accountable and most unbending in the United States. One is a nursing home in St. Louis, Missouri, that cares for a family member of mine, which in its operation is not that different than the more than 15,000 licensed facilities nationally. The other is a medical clinic in metro Portland, Oregon, where I visited a doctor for a visit in September this year. Each represents a part of the much larger systems of for-profit healthcare and nursing home care, and their structure and management are likely representative of their thousands of counterparts throughout the country.

Both of these institutions that provide medical and health services are, theoretically, there to serve others and provide services that are essential and also something most persons see as “morally good.” These two facilities are not related in any way. Yet both are much alike in how they function as bureaucracies that are mostly intractable in their actions and inflexible when asked to be accountable. 

In my long decades now of dealing with bureaucratic systems, I have learned important lessons. The most important of those lessons is to never accept “no,” which is the reflex response of organizations that do not take ownership for their actions that can cause harm and can be morally wrong. 

I spent decades of my life fighting a large bureaucracy in Michigan, the Michigan Department of Health and Human Services, which denied me my original birth records for nearly three decades, even after I had met my birth mother who signed a consent form in 1989 that should have forced the agency to give me my original birth certificate. It took a court battle to secure my birth certificate’s release in 2016. The long dance I had with that ossified bureaucracy provided wisdom I continue to use in how I do my work professionally today in a large government agency and how I deal with other bureaucracies that intentionally choose to do wrong as opposed to good. In nearly every sense, being an adoptee denied basic legal rights was my advanced training how I respond to immoral, inflexible systems and institutions to this day.

Fighting in the trenches with the nursing home system

For nearly two years I have had to engage in long-distance advocacy for my family member who is permanently bedbound in a Medicaid-funded nursing home in St. Louis. These efforts mostly focus on getting the staff there to provide legally mandated, competent care, which is lacking. The facility is privately run, but receives federal reimbursement in the life-saving help for my family member. However, it continues to fall short in many ways, such as how it informed family members of COVID-19 outbreaks, the offering of required services such as oral health care, and most recently in not offering seasonal influenza vaccine and COVID-19 vaccine boosters. Both are recommended for these settings and for patients like my family member. My family member has not received either of these shots, but should have already by early November.

I continue to work with the Missouri Ombudsman Program, which has no regulatory power over these places. It mostly has moral authority to embarrass the nursing homes and nudge them to providing what is mandated already by law. I did that again this week, when I found the facility caring for my family member had failed to offer either of these potentially life-saving shots to my family member. 

When I called the nursing home facility, I could not get a straight answer if and when the shots would be provided. I was transferred four times. No person gave their full name. A woman said I should call back the director, who now refuses to respond to my communications. The last person I spoke to told me, in true bureaucratic fashion:

• They were “just in zoom meeting” that morning to plan for vaccinations—a remarkable coincidence of timing.
• They claimed the pharmacy has not been provided materials. This was not explained further, and often there are partnerships that come into nursing homes.
• They could not provide any timeline about when either boosters or the flu vaccine could be provided.
• They refused to answer my questions if they had planned for routine seasonal influenza vaccinations, which for decades has been is a standard healthcare activity in for all nursing homes and long-term care facilities in this country.

I do not think my efforts solved this problem. I doubt the root issue of poor care is solvable. But I was determined to do my best and just ask them to do their job and care for their residents that they have legal, professional, and moral responsibilities to fulfill as a licensed care facility in the state of Missouri. I also relayed my concerns in writing to the Ombudsman representative, who said they would send a representative to that facility to see how my family was doing and if these vaccines would be administered.

The black box of medical billing, the hallmark of the for-profit U.S. healthcare system

This week, I continued in my efforts to get answers to questions I posed to a medical clinic in Portland to explain why it charged me a high cost for a procedure that could have been charged less than half the final amount. My call marked the third time I asked this medical clinic to explain why a visit involving a conversation with a doctor and the analysis of a test result was charged more than $500, when it could have been as low as just over $230 or up to $600 or more. The black box hiding this information is hidden to all patients, as it is for many charges for medical care in the United State. My efforts with all providers is to get them to tell me the cost in advance, and when they fail to do that—which is nearly always—I ask for breakdown how a consumer can learn how a charge is made. 

My call a month ago was never returned, and once again I talked to a billing representative lasting nearly 15 minutes. I was not rude, but I was firm and unflinching asking for the company to explain how it determined a cost of service. The replies were:

• Sir, I don’t understand your question (said three times after I kept repeating my request).
• The insurance has paid for this. Your balance is zero. That really means, what is your problem, leave it alone, and the system is broke and let’s not try to fix it with this issue.
• You’ll have to speak with our manager. I am not able to answer your questions. It could be because it was a new office visit.

I was then transferred to a manager’s voicemail. I left my third message and await a call that may or may not ever happen.

When I have made such calls in the past, I have been “accidentally” canceled as a patient for future visits. Mostly I have been told that the team reviewed the notes and that the medical charges are correct and not being changed. 

Why fight battles that may never win the conflict?

As I contemplate my skirmishes with bureaucracy this week, in that enormous world of health care and nursing home care, I again had to confront myself and my goals. So why do what I do? When I look in the mirror, I see the person I was when I was younger, as an adoptee denied my legal rights, and told by every institution and person around me I was never going to get what I was legally mandated to own and have as a human. I see someone who had to learn, through trial and painful error, a path forward. 

So again, why? The answer is simple: Because even small efforts matter and because when harm happens, to millions of patients or nursing home residents, it is clearly immoral and wrong. These engagements also help focus my mindset and my practice that is needed for dealing with unaccountable bureaucratic systems. 

In those engagements, the lambs are usually skewered and the lion will always stand strong, even if the victory means losing that battle. I choose to be the lion.