She’d given me the look.

That look, of doleful disapproval, on my mother’s otherwise silent face will never leave me.

I’d spoken with authority, against those to whom she had submitted. My efforts were in her defense – her immediate creature comforts, her broader sustenance, what she deserved from those to whom humane treatment was allegedly a priority.

My mother’d given me that look. She did so, because she could no longer speak. My mother was dying, of terminal brain cancer.

The medical center to whom she had relinquished her vulnerable body had – as far as my eye, ear, and remaining senses could perceive – utterly failed.

Her diagnosing surgeon had gone on vacation, to publish his new novel. The PA in whose charge she had been placed had us on hold, instructed to reroute her past surgical options to the latest chemo protocol still on the shelves at the local cancer center. That facility sent its physicians on rounds, to speak with us in the hospital room, check her vitals, and determine when the chemo port should be scheduled. The chemo port procedure failed. Her lung was punctured; she wheezed; I tore around that ward like Shirley MacLaine in “Terms of Endearment” until a portable xray machine was located and a technician to take the image. The nurses assigned to her charge were surgical, moved to the cancer floor to cover for short staffing, and had no idea how to operate her chemo infusion machine. Her veins rolled; the caustic solution, intended for the chemo port in her sternum which hadn’t found its destination dispersed through her tissues, never reaching her brain. She likely stroked out, losing what little ability she had left to either speak or press the call button, and filled a toilet feces collector tray which sat for hours on a hot August afternoon until I, returning to my watch after a brief lunch, sourced the choking odor. The nurses who were assigned to periodically turn her in the bed were absent; when asked to appear, one of them jerked her body so abruptly the lung tube came out and had to be reinserted. Finally, the surgeon returned from his vacation, took one look at her, pulled me out into the hall, told me she “didn’t look good”, and assigned Hospice to convince us to take her home. Two weeks later, the sun streaming in the bedroom window, my mother took her final catch breaths as I held her hand. The date was August 4, 1995.

Little has changed, at that medical facility, except for a magnificent expansion of most all departments and building additions. The nurses are still short handed; the bedside attention completely dependent upon the availability of qualified individuals; and, patients are still subject to a level of care that is based entirely upon their willingness to comply.

Compliance.

An agreement to do whatever one is told, without argument.

Life, and its counterpart – death – notwithstanding.

In generations past, principally the one within which my mother was raised, people were trained to care. And, the professions dedicated to helping others attracted the truly compassionate.

What changed?

Enter the “model.” Such is a behavioral plan, designed and then applied to both institutions and corporations. Because of the veritable size of contemporary enterprise, management of such breadth has required a top down approach to containment – the goal being to maintain order. Without order, systems collapse.

But, hierarchy has its own, inherent weakness. Power, established at the top, while appearing to solidify structure ultimately produces imbalance. How, and why?

When there is power at the top, the distribution of decision making becomes diluted. Multiple departments are created, over which each has its own manager; this produces compartmentalization, which becomes not only a pattern of action but a mentality which infuses perception. This, in turn, births insularity.

When insular thinking pervades, everyone existing within its cocoon learns to believe that what happens in their comparatively tiny world defines reality everywhere. Any notion of standard, whether intellectual or moral, is completely subject to thinking which is increasingly ruled by opinion rather than fact. Accountability diminishes. One answers only to one’s immediate superior, who may or may not have a cogent grasp on anything.

What’s worse, those who actually do possess the cognitive mettle to interpret situations functionally are so far removed from each compartment that assessment is reduced to remotely accessed paperwork.

Enter the health care institution. At the very bottom of this malignant monstrosity is the bedside caregiver. Whence does valid authority rule? And, most importantly, who cares?

Tyrants look at this picture and choose depopulation. Reduce the volume; solve the problem. Oh?

The word “money”, both its acquisition and domain, has yet to enter this discussion. Perhaps the reader carries awareness of its power, in silence; by now, most regardless of socio-economic status know those at the top seize enormous salary and, with it, the power to determine the hourly wage of their counterparts on the bottom rung. In the medical field, those who have direct interaction with the most vulnerable receive the least in compensation.

The model which has informed the structure of health care institutions comes from big business. In my day, the theory driving its application was called Total Quality Management – TQM. This idea birthed the meeting room, wherein all employees from a given level were called together, allegedly to air all grievances, and given a promise of follow up action. Over time, all learned to expect from these pretensive scenes little to nothing beyond status quo. Those in charge selected the appropriate form, filled in data where required, and filed it in a slot marked “Reports.”

To date, I have been “dismissed” from three medical practices. I am no longer a good “fit.” As the patient in pain, I am documented as alternately defiant, my tone lacking in “professionalism”; whereas, my transgressions have included identifying both irregularities and errors, naming them, questioning why, and asking for further assistance. As the patient, I have been non-compliant.

Theoretically, we in the United States have an advocate. It’s called Congress. Should I appear before this body, stand from my seat, be recognized, and speak, be forewarned.

Those who seek to silence me can expect the look.

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Copyright 4/21/23 Ruth Ann Scanzillo. All rights those of the author, whose story it is and whose name appears above this line. No copying – in whole; part; or, by translation (except you, Hans-Jorg!) – permitted. Sharing by blog link, exclusively, and that not via RSS. Thank you for respecting the truth.

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