| 
  • LinkedIn
  • Add to Favorites


 Parkinson’s Disease: Anomalies Of Bionic Medicine

 

 

This is the final installment of our blog series, “ProviderNation In Print.” We were so taken by Tellis-Nayak’s gripping, poignant, and candid descriptions of his struggle with Parkinson’s disease (PD), we feel these posts are worth every drop of ink.

My introduction to Deep Brain Stimulation (DBS) also introduced me to a wide difference among hospital policies and safety protocols. In a tertiary care hospital, the sanctuary of modern medicine, I witnessed homage being paid to the false gods of irrationality.

I was at the center of a scary incongruity, only hours before surgery. I was at the hospital late Wednesday evening, sporting a confident smile that masked my diffident heart. To combat PD, the docs were to plant a sentinel inside my skull—and I had no clue how my brain would accept its new roommate.

Fiasco Avoided

I perked up when they brought in, as a compromise, not the bed we requested, but a reclining chair, so my wife, Mary, could be with me the pre-surgery night. A parade of clinicians drifted in and out. They checked my vitals, told us what I could eat and drink (a strict fast beginning at midnight), and what meds to take (strictly no PD drugs tuntil after surgery—they seriously hinder the optimal positioning of the deep brain device).

The parade continued through the night; new faces materialized by my bed at unpredictable intervals. Each time they nudged me awake, introduced themselves, and checked my vitals for the hundredth time.
Mary, a reputed expert in person-centered care, was aghast; none of the well-meaning clinicians were aware that they were complying with a misguided protocol that disrupted her husband’s rest on the night before major surgery.

Her conclusion: “This system is thoughtless and ill-planned. Could it be they have not heard of patient-centeredness and of customer service?”

It’s 5:00 a.m. I am up again, this time fully awake to be prepped for surgery.

Vivian and wife, MaryAt the tail end of the parade, friendly Nicole, RN, shows up, chit chats, and graciously asks, “Are you ready for your first dose of medicine?”

Ever vigilant, Mary is up instantly, sitting bolt upright. The nurse in her wants to know: “And what medicine is that?” Nicole reads out, word after deliberate word, the prescription. In effect, she detonates a bomb: “It is his first dose of Parkinson’s drugs.”

The verbal cat fight that followed was great theatrics, but it should not have been a part of my prep. Mary puts her foot down and will not let me take the medicine, and Nicole invokes the protocol that includes no “hold” on the pre-surgical administration of the medicine. An accord is reached, and Mary is declared the hero. She had forestalled a disaster. An expensive eight-hour surgical event presided over by the high priests of medicine, backed up by state-of-the-art support system—all this would have come to naught and would have triggered a cascade of financial, legal, and ethical consequences.

Mary had spared me the clinical fallout from a tragic medical fiasco.

Weak Links and Pitfalls

It unnerved me to see up close how one weak link can unfasten a fine-tuned intricate procedure. My spirits sank further when I discovered there might be other kinks in the system.

Everything was a go. I am at ground zero waiting for a stranger I have never met to come and drill a hole in my head.

The surgeon arrives on time. He coasts in with an unexpectedly jolly demeanor; he greets the assembled acolytes and cheerfully lobs a question somewhere in my direction, “So, which side do I drill today?”

The casual question hit me like a ton of bricks. “Which side? He doesn’t know?”—an inaudible scream welled from my depths and my mind conjured up an image of a scalper who does his routine on one nameless head and moves to the next.

His question probably was part of a best practice among clinicians to avoid identity errors. Still, his demeanor, words, and tone did little to reassure the befuddled and unnerved patient at his mercy.
A credentialed brain surgeon who flouts elementary rules of psychology and courtesy—how does a hospital monitor such behavior and measure its effects?

Earlier that morning I watched in living color another misalignment: a technical compliance to protocol out of synch with the needs of the patient and of the moment.

On the way to surgery, my gurney made stops; nurses, interns, and other unknowns took their turn with me. They asked me questions. Again and again I told them my name and date of birth, wondering why at this stage they were not convinced that I was really me. I took note. Most questioners showed concern, but were not focused. For sure, they were not hanging on my answers.

Anxiety-Inducing Incongruities

They kept asking their scripted questions, I mumbled inaudible or incorrect answers. A lower-rung functionary sensed my playfulness and winked me his approval. None of the others caught on; they had followed protocol and that was that. I witnessed other incongruous encounters at every turn.

When medics meet patients and their families in a hospital setting, they are usually not aware that their demeanor, even a single word or gesture, may have an unintended blighting effect.

The anxious and sometimes traumatized patient looks for a meaning in every nod, shrug, or smile. A casual observation, a hint of impatience, interrupting the patient’s narrative—the silent vocabulary of our everyday body language—may carry a dire message or may seem to trivialize the patient’s concern.

Hi-tech medicine should not be incompatible with the caring touch.

My surgery complete, I run smack into yet another glitch. A considerate, muscled orderly wheeled me to the recovery room. Mary was waiting for me, looking her happiest; the doc had told her the surgery was an A-plus success. The orderly aligned the gurney with the recovery room bed. He gingerly stepped aside and politely asked me to scoot over from the gurney to the bed.

Instantly Mary’s spine went ramrod straight—her Irish was up. “What are you saying?” she demanded. “My husband has just had brain surgery; he cannot transfer to the bed by himself!”

The orderly visibly shrank. Timidly, he whispered, “Nobody told me that!”

Untapped Resources

Back to home life, the surprises continue. The hospital that offered me a course (call it: hi-tech success and low-tech failure) on the promise and perils of modern medicine makes the honors list of the top safest hospitals in the country.

A national magazine hails the technical and behavioral innovations in these hospitals to combat hospital-based infection and human error that harm one in three patients and kill 180,000 every year.

Sadly, I find it does not refer to a single hospital that has partnered with staff, patients, and families and has viewed safety from their unique vantage point.

The glitches I encountered all occurred below the radar of the hospital’s state-of-the-art, risk-alert system.
My DBS surgery, by any standard, was a modern medical miracle. That feat was accomplished despite the pitfalls that lurked around every corner—that was no less a miracle.

Vivian Tellis-Nayak, PhD, is senior research advisor at National Research Corp., Lincoln, Neb. He has been a university professor, whose scholarly work has been published in national and international professional journals. He has conducted research in the United States and abroad, and his major findings have reached a wider public through his writings in trade magazines. Tellis-Nyak can be contacted at vtellisn@gmail.com.

Facebook.png   Twitter   Linked-In   ProviderTV   Subscribe

Sign In