Nurses Give Their Expert Advice on Understanding the Broken Health Care System

I have been on the lecture circuit. My topic is Empowering the Patient: How to Navigate the Health Care System. Two presentations down and two to go with another in the negotiating stage.

I’m fine-tuning the presentation based on the feedback I have received from my audience each time I give the talk. Sana Goldberg’s recently released book: How to be a Patient: The Essential Guide to Navigating the World of Modern Medicine has added an extra layer of emphasis on the importance of nurses’ influence in the health care system.

She writes:

 

I believe nurses are best poised to change the future of healthcare.

Today, registered nurses spend more time physically present with patients than any other healthcare professional, and as a consequence we see and hear a lot. We maintain a vantage point markedly different from that of the MD, the scholar, the journalist, and the policy maker. We are intimately familiar with the complexity and multiplicity of the patient experience, as well as the systems in health care that fail to acknowledge it. We witness the system’s barriers regularly, and in turn we come up with creative solutions to side step its most vexing realities.

(Sana Goldberg, How to be a Patient: The Essential Guide to Navigating the World of Modern Medicine, page XXIV)

Doesn’t that last sentence remind you of Teresa Brown’s New York Times Op Ed essay that I posted just last week? Side stepping vexing realities is another way of describing the “workarounds” that Brown described.

I’m using another book written by a nurse for my talk. Finish Strong: Putting Your Priorities First at Life’s End by Barbara Coombs Lee, who besides being a nurse is a lawyer and President of Compassion and Choices.

Both books are well written and easy to read and full of great information that older readers will find helpful. And, of course, I am pleased that they are written from a nursing perspective.

Meeting Nancy Panko

I was one of about thirty authors who attended the program, Authors in Your Backyard: A Celebration of Local Writers, held at my neighborhood library on a Sunday afternoon not too long ago. I arrived with copies of my book: Stories from the Tenth-Floor Clinic, and the syringes

Highlighter Syringes

to lure readers to my table. I didn’t know to bring a pretty colored cloth to cover my part of the table that I would share with another writer. Before the program started—a keynote address by a well-known mystery writer and five randomly selected readings—I roamed the room meeting the other authors.

At the very first table by the door, a woman about my age set up her books beside a poster publicizing her work. She had brought a table cover onto which she pinned a large sheet that announced: “Nancy Panko, author of Award Winning “Guiding Missal.” Her display could have been inside a book store. She had done this before.

While Nancy’s book was not about nursing, we soon discovered we were both nurses. She became a nurse in her late 30’s. She has been published 10 times in Chicken Soup for the Soul. Her 11thwill be in the next Christmas edition.

Nancy Panko epitomized the type of nurse I have long promoted. One who writes about her life as a nurse. Plus, she is an older woman. A great role model.

So, I asked her if I could spotlight her in my next post.

Here are two of her Chicken Soup stories and a link to her award-winning book: Guiding Missal.

Guiding Missal

Click here to order.

At the end of the stories, Nancy answers two of my questions:

Why do nurses need to publish their stories?

What has nursing done for you?

 

A Journey of Healing

On a sunny July day, my younger brother Terry was killed as he attempted to cut down a tree. He died instantly of traumatic head injury. In the blink of an eye, I no longer had a brother. He wouldn’t be in my life to tease me, give me advice, or to make me laugh. He was just gone, leaving a huge hole in all our hearts. The pain was unbearable.

As I grieved, I found I wanted to pay tribute to my brother’s life. At the age of 14, I announced to my parents that I wanted to be a nurse. As I grew up that goal got pushed aside, I got married and had children. I prayed that somehow I could find a way to go back to school to realize my dream of being a nurse. My husband and children were very supportive and we all prayed that God would show us the way…and he did.

I enrolled in nursing school, achieved good grades and made Dean’s List. In my Junior year, I began carpooling with Jeanne, one of the Intensive Care Unit (ICU) instructors. Driving fifty miles a day, we shared confidences and family stories. She became a mentor and a friend. I explained how Terry’s death affected my decision to return to school and how fragile I was just thinking about treating a traumatic head injury patient. She listened intently and seemed sympathetic.

The day before our senior year ICU clinical experience, Jeanne, my mentor and car pool friend, assigned me a traumatic head injury patient. I was in shock and disbelief. I prayed silently for help. I could not let my emotional, personal experience interfere with giving this patient the best care possible.

Upon entering the ICU, I learned that my patient was in surgery, having his second operation to relieve pressure from a blood clot on his brain. The doctors had given him little chance of survival. Terry had no chance at all, but this guy does, I thought. He’s still here, fighting for his life, and I’m going to do everything in my power to help him. I prayed for my patient and his family in the waiting room.

That afternoon and evening I studied the patient’s chart. His name was Sam, he was nineteen years old, the youngest child of a large close knit family and his accident was eerily similar to Terry’s. He worked for a tree-trimming company and while strapped in his safety harness perched in the tree to trim branches, he was hit in the head by a falling branch. He hung upside-down in the tree for nearly an hour before being extricated. He suffered a fractured skull with a large blood clot on his brain. A device was in place to relieve and measure the pressure inside his skull. A ventilator helped him breathe, he had arterial lines, IV’s and a urinary catheter. He had been given The Last Rites. Twice.

The next day, just after dawn, I saw Sam for the first time. His head was swathed in bandages, he was unresponsive and motionless. His tall frame completely filled the length of the bed, no sign of awareness in that young body.

My knees were weak, but I knew every detail about his physical condition, medications, procedures and his monitors. In ICU, the details can mean the difference between life and death. I can do this, I said to myself. All my hard work to this point comes down to this day and this patient. I laid my hand on Sam’s arm. “Good Morning Sam. I’m your nurse for today, my name is Nancy.” I told him the day of the week, the date, the time, what the weather was like. I chattered on while gently caring for him. There was no response. After morning care and charting I took time to speak to his family.

Out in the waiting room, I approached a tired-looking woman and introduced myself to Sam’s mother. She told me all about Sam and the family. I asked her to join me in a plan to stimulate her son and, hopefully, lighten his coma. I asked her to bring in a radio to play his favorite music and family pictures to tape in easy-to-spot places around his cubicle. I shared my nursing care plan with her and she felt included. This plan was also a prayer. Sam’s mother had a glimmer of hope and was pleased that she could help.

Each day we carried out the plan. I talked to Sam and played his favorite music. While completing all my nursing duties, I told him about the leaves changing colors and about the apples and cider for sale along the roadside. His vital signs were stable, no signs of infection but there was no response. It was hard to see this young man remain so still.

One day, as I struggled to put one of his heavy, long legs into his pajama bottom, I said, “Sam, it would be great if you could help me. Can you lift your leg?”  His leg rose five inches off the bed. I tried to remain calm. “Thank you, Sam. Can you raise the other leg.” He did it!  He could hear and follow commands, he had bilateral lower extremity movement, still, he had not regained consciousness or opened his eyes.

The next morning, I was told that during the night Sam had started breathing against the ventilator. As I came into his cubicle, I put my hand in his and told him I was there for the day. Sam squeezed it! I grabbed his other hand and asked him to squeeze again. He obeyed. Both hands and arms working on command. Praise God! I encouraged Sam all day. By the afternoon, he was breathing totally on his own and no longer required the ventilator.

Still his eyes remained closed. As I worked with Sam the next day, he turned his head from side to side to follow my voice wherever I was. I brought his mother into ICU.   “Sam,” I said, as his face turned towards me, “Your mom is here.” A tear slid down his cheek. “Sam,” I repeated firmly, “your mom is here. Please open your eyes.” We watched him struggle to lift his eyelids. Finally, his eyes fluttered open, but he looked toward the sound of my voice. “Sam,” I said, walking around the side of the bed to stand behind his mother, “look at your mom.” Suddenly, recognition dawned in his eyes as he gazed at his mother’s face and began to sob. The staff and my instructor, Jeanne had gathered to watch this miracle unfold, they were all crying. I partially lowered the bed’s side rail for a long awaited mother and son embrace. I felt so blessed to be a part of this journey of healing.

Sam continued to improve rapidly and was soon discharged from ICU to the Rehabilitation Unit where he had to learn to walk, talk and perform all his activities of daily living. His mother was at his side every day.

In caring for Sam, I had dealt with my grief, loss, fears and emotions. I was able to do for Sam what I couldn’t do for my dear brother, Terry. Against all odds, Sam survived.

A few weeks later, while walking through the Rehab Unit, I heard someone call my name. It was Sam’s mother. We hugged, she was smiling. I saw a tall, handsome young man standing next to her. His formerly shaved head had grown a crew cut beginning to hide the many scars. I barely recognized him.

“Hi Sam, how are you?” I said. “Do you remember me?”

He cocked his head and spoke haltingly.  “Your voice sounds so familiar.”

The lump in my throat only allowed me to respond, “I was one of your nurses in ICU.”

His words came out haltingly, “You..are..Nancy..My..mom..told..me..all..about..you.”

Here was a true miracle standing before me. For two weeks, my life was intertwined with Sam’s as we each experienced joyful healing.

One day, while Jeanne and I were driving to school, I gathered the courage to ask her why she blindsided me by assigning me a traumatic head injury patient, when she knew my story. She explained that she believed in my nursing skills and even more so in my character. She wanted me to face my fear while she was there to watch over and support me. I was emotionally touched to feel her kindness.

A few months later, at my graduation, I received flowers from Sam’s family. The card said,” To our Angel!” On this journey of healing, I believe that both Sam and I had the divine blessing of someone watching over us.

Chicken Soup for the Soul—Find Your Inner Strength, November 2014, 303

 

 

 

 

 

A Cast of Characters

It was the first week of September, a beautiful late summer evening that made you glad to be alive. I wanted to be outside, but I sat at the kitchen table studying for a biochemistry exam. George was relaxing, reading the newspaper. Our fourteen-year-old daughter was attending the first high school football game of the season and our seven-year-old son was in the front yard playing soccer with a friend. Suddenly, a blood-curdling scream outside had us jumping up and racing toward the sound. My gut churned hearing the agonizing howl of pain coming from our child.

George and I burst through the screen door running toward our boy who was lying on the ground screaming, “My leg, my leg.”

Rushing to his side, I cradled his head and told him to lie still and not move. Tears streamed down his face, as he reached toward his contorted leg.

“Call 911,” I said to my husband. I was sure his leg was broken.

At the first sound of sirens and sight of flashing lights, many neighbors flooded into the street. The ambulance and EMTs pulled into our driveway and promptly got to work. They splinted the lower half of Timmy’s body and moved him onto a stretcher.

A nurse neighbor approached me and offered to call the surgeon she worked with to meet us in the ER. Gratefully, we said yes. Timmy was loaded into the ambulance. We followed in the car.

The ride was a short one and the surgeon was waiting for us. Technicians whisked our frightened seven-year-old off to x-ray, George and I trailed alongside the litter, holding his hand.  Minutes later I stood next to the doctor as we looked at the films. “A spiral fracture of the femur is serious business.” I could see exactly what he meant. There were a good three inches between the ends of the broken bones.

I faced the doctor. “What does this mean as far as treatment and hospitalization?”

“He’ll need a pin in his leg then two weeks in traction. When the bones are aligned I’d put him in a hip spica cast.”

“What’s that?”

“It’s a little smaller than a full body cast, starting just under his rib cage extending to his toes on the fractured leg and to his knee on the uninjured one. A stabilizing bar will be attached as part of the cast to keep his legs in alignment.”

I felt weak in the knees and my mind was racing. I was in my first full year of nursing school twenty-six miles away. The only prayer I had of staying in school was to have Timmy transferred to an orthopedic specialist at the hospital in which I was doing my training. I could stay with him when I wasn’t in class and do my homework in his room and spend nights in the nurse’s residence. The surgeon respected my wishes and gave the order for the transfer.

That short term plan would suffice as long as he was hospitalized, but what would we do when he was discharged in that hip spica thing? George calmly reassured me we’d take one day at a time.

As soon as our parents heard what happened they said, “What do you need? And how soon do you need us to come.” We were relieved at their generous offer to help and set up a tentative schedule, to be firmed up as soon as we had a discharge date.

Two weeks later, we were given instructions for home care: two people had to turn him every two hours because he was no longer a featherweight little boy, but a large bulky plaster boy. At all costs, we could not jostle the metal skeletal pin apparatus protruding from the cast. We had to make sure he was adequately hydrated to help prevent blood clots due to his inactivity. He had cut-outs in the cast to allow for bodily functions using a bedpan and a urinal. We borrowed a mechanic’s creeper so we could place him on his stomach to play. Elevated on pillows to keep the metal apparatus from touching the floor, it was easy for him to pull himself around on the ball bearing casters while he maneuvered his little cars and army men. We alternated him between a sofa bed downstairs during the day and his own bed at night.

Our parents lived with us and cared for Timmy for three weeks. Everyone had the tutorial on how to care for the boy in the cast. George came home for long lunches to pitch in. However, weeks loomed ahead where we had no help.

When our wonderful neighbors heard there was a possibility I’d have to leave school to take care of Timmy, one, in particular, became a lifesaver setting up a schedule of volunteers to help during the work week. A nurse herself, Lynne was eager to assist. She was a Godsend. Words can never express how grateful we were for her help. She brought a red stake body wagon which was padded with many pillows so she could pull Timmy around the neighborhood on nice days. She set up a chaise lounge in the shade of the front porch with, you guessed it, lots of pillows, and Tim would color or read books.

For three weeks my neighbors covered Monday through Friday so I didn’t have to take a leave of absence from school. My heart burst with thankfulness for their sacrifice and kindness.

After six weeks in the cast, Timmy was admitted to the hospital to have the contraption removed and begin physical therapy to learn to walk all over again. I stayed in the nurses’ residence until he came home using a tiny walker. He was not allowed back to school until he could manage walking with crutches. When that goal was reached, George drove him to school in the morning and Lynne picked him up in the afternoon. Both the kids got home about the same time and Margie supervised her little brother until I got home at four PM. It was a team effort.

One afternoon in the first week of December, three months to the day after the accident, I came through the door to see my two beautiful children sitting at the table having an after school snack. “We have a surprise for you, Mom. Close your eyes.”

“Okay, they’re closed.”

Several seconds passed. “Open your eyes now.”

I opened my eyes to see both kids grinning from ear to ear. Timmy was standing unassisted and slowly walked toward me. I began to cry as he reached out his arms for the best hug ever.

Three years later, I graduated from nursing school, having made the Dean’s list six times. It humbles me to know my achievement would not have been possible without the kindness and sacrifice of family and friends to get us through a most difficult time.

Chicken Soup for the Soul—My Kind of America, August 2017, 240

 

Why do nurses need to publish our stories?

Nancy: As helpers, we know that there is more than one way to heal the body, mind, and soul. In writing fiction, we entertain while providing information and giving the reader a chance to escape reality – temporarily. Non-fiction can be instructive, informative, and educational in a private non-threatening way. Nurses on the job are creative, improvisational, and innovative, not only caregivers. Nurses are often underestimated but everyone knows that it is the nurse who is with the patient for 8 – 12 hours a day, not the doctors. The nurse is the patient advocate, she is the communicator of the patient’s condition while under her care, she is the liaison between the doctor and the patient. She is the glue that holds the entire hospital system together. If a nurse also has a penchant to write, those qualities come through onto the page.

 

What has nursing done for you?

Nancy: Nursing has enriched my life beyond measure. I returned to University 17 years after I studied the first time. At the age of 35, I was the oldest in my nursing class. It was the hardest 4 years of my life but I wouldn’t change it for anything. I graduated the spring before my 40th birthday and watched as my family cried when I walked across the stage to accept my diploma. Non-traditional students, that’s what they called us, are typically more motivated and focused in their studies and on each clinical rotation and that was true for me. As a well-educated nurse, my basic knowledge and ability to reason have never left me. Nursing is like the mafia, I can’t get out even in retirement because family and friends always ask my opinion on health-related issues. I’m always having to palpate bumps and lumps and looking at spots and rashes. My stock advice is usually, “I think you should see your doctor” or “put some calamine lotion on that poison ivy.”

What Was My Memoir Really About?

This guest post was written for She Writes Blog on November 29, 2018.

My book, Stories from the Tenth-Floor Clinic: A Nurse Practitioner Remembers, took me about seven years to complete. I couldn’t seem to rush the process. A mentor told me “the book will take as long as it needs to take to be done.” And only after I finished the book did I understand what my story was really about.

My nursing career covered forty years. As soon as I retired I began to record those years starting with nursing school. When I reached the early 80s, a tug in my gut told me that I couldn’t go any further. During that time I was the coordinator of a not-for-profit clinic in Chicago targeting the underserved elderly. Throughout the years, I always remembered the clinic as being totally different from any other job I ever had. Located on the tenth-floor of an apartment building for low-income seniors, the open door policy allowed anyone to walk in—with a heart attack or carrying a loaf of zucchini bread.

As a new nurse practitioner (I had been a registered nurse for twenty years before I went back to school to become an NP), I narrowly viewed my role as a health care provider. I would see patients in the clinic for illnesses or health maintenance. That the elderly had multitudinous social and economic problems initially eluded me. Or was it that my lack of education in geriatrics, a new specialty at the time, that contributed to my misconceptions?

Many of my patients’ stories were captured in a journal that I kept while I struggled with the dilemmas that challenged me—patients choosing between food and medicine, or were victims of family abuse, or targeted by scam artists from the community. I often vacillated whether I had any right to step in and take over a patient’s finances or change the locks on the doors. With no road map, I fumbled along, sometimes butting heads with my staff in deciding how to intervene. 

I learned that what I wrote initially in the book was not a clear map of what I wanted to convey. I just wanted to tell this story. But what story? My memory cast my co-workers in roles that inhibited my progress. With each rewrite, I softened my harsh critique of others and uncovered some detrimental actions that I had initiated. My insight became sharper when I let the story percolate in my head rather than rushing to rewrite. Reflection and patience, albeit over seven years, finally enabled me to be truthful to what happened in the tenth-floor clinic.

In retrospect, I see that having a preconceived notion of what I wanted to write had caused me to miss what was behind the real story. My belief about the stories from the tenth-floor clinic stemmed from what I remembered—my truth at that moment. The passage of time has a way of rearranging recollections. It was only after examining my place in my memoir that I uncovered what the story was really about, even if I had already lived it.

The book took as long as it needed to take to be done.