Patron of Nursing

Barbara Jonas, 84, collector of art and patron of nursing, died on October 23, in Manhattan.  I had never heard of her. But the heading of her obituary in the New York Times on November 9th grabbed my attention. She was a patron of nursing along with her husband, Donald Jonas.

In 2016, the couple sold off half of their art collection to form the Barbara and Donald Jonas Family Fund, earmarking their first contributions to nursing, which Mr. Jonas described as “the most undervalued profession.”

This is a quote on the fund’s website:

“Nurses are the backbone of the American healthcare system. It is essential that we support nurses and the vital role they play in our hospitals, schools, clinics, nursing homes and on the battlefield.”      —Donald Jonas, Co-founder, Jonas Philanthropies

The couple also “sought to encourage connections among players in the health care system.” You could think here of hospitals and medical schools but the couple choose nursing schools to connect with hospitals.

While learning about the Jonases, I am re-energized that their foundation is supporting nurses but I know that there still are a large number of folks in the public sector that do not appreciate or understand what nurses do. Or even if nurses make a difference in the health care system.

 

There are two nursing efforts currently promoting/supporting nursing practice that you may find interesting.

1. Coalition for Better Understanding of Nursing.

The Coalition, recently launched, seeks to unite hospitals, nursing schools, and other nursing organizations in a robust effort to strengthen nursing and improve health care by educating decision-makers about the value of the profession.

(This is a working group of The Truth About Nursing, founded in 2001, to increase the understanding of the role nurses play in modern health care.)

2. Nurse Manifest

Established in 2000 is a call to conscience and action to:

  • Raise awareness,
  • Inspire action, and
  • Open discussion of issues that are vital to nursing and health care around the globe.

 

May these venues and others that promote the profession of nursing help to increase the value of nurses and the number of patrons of nursing.

The Perks of Serving on the Board

 

I have served on the Family Patient Advisory Council at my local hospital in Raleigh, North Carolina since it’s inception a little over two years ago. I became the first Chair and now I am the Senior Chair.

This last week, the hospital funded my travel to Chicago to attend the Patient Experience Conference 2018 where the Chief Nursing Officer, Manager of Service Excellence, also a nurse, and I gave a presentation: Operationalizing Patient Advisory Council: Going Beyond the Boundaries.

 

I felt privileged to discuss the successes and challenges of our group and pleased, as a retired nurse, that I am using my background in health care services to facilitate change. In this case, to promote and improve the patient experience.

 

Patient Experience

Patient experience encompasses the range of interactions that patients have with the health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other health care facilities. As an integral component of health care quality, patient experience includes several aspects of health care delivery that patients value highly when they seek and receive care, such as getting timely appointments, easy access to information, and good communication with health care providers.

Understanding patient experience is a key step in moving toward patient-centered care. By looking at various aspects of patient experience, one can assess the extent to which patients are receiving care that is respectful of and responsive to individual patient preferences, needs and values. Evaluating patient experience along with other components such as effectiveness and safety of care is essential to providing a complete picture of health care quality. – Agency for Healthcare Research and Quality

At the conference, not only did I learn about the patient experience movement and its growing numbers of supporters, I came away excited about the direction of health care.

After the conference, I met my friend Lois. Our friendship spans 40 years. We had one day of sleet and one day of sun in our quest to revisit old haunts and discover renovations to Chicago’s old buildings. At Navy Pier we asked a mother and daughter to take our picture. It turned out the daughter was starting nursing school with the intent to become a nurse practitioner. At this serendipitous meeting, Lois and I shared sage advice about the rewarding aspects of a nursing career.

Back home in temperate North Carolina, I look back at my time in Chicago and feel privileged to have attended the conference and had the added perk to have spent time with Lois.

Have you ever considered being on a Board?

I have choosen to reblog this post because I believe nurses bring invaluable skills and knowledge to various health care boards. I am currently serving on a board at Duke Raleigh Hospital in Raleigh, NC.
Next week I will be in Chicago at the Beryl Institute Patient Experience Conference along with the Chief Nursing Officer, and the Manager of Service Excellence to give a presentation about our Patient Advocacy Council. I will post updates from the conference and share more information about my board experience on future Posts.

NurseManifest

Here at the NurseManifest project, we have tended to emphasize grass roots, “on the street” kinds of activism to bring our deepest nursing values into everyday experience.  But manifesting nursing values needs to happen everywhere, and one of the spheres whereconference-table this is vitally important is in the Board Rooms, large and small.  Lisa Sundean, who is one of our NurseManifest bloggers, is embarking on her dissertation project to explore nurses on Boards, and in the interest of sharing her work wide and far, she has established website and blog – SundeanRN.org!  Her first blog post is now available, explaining why this is vitally important!  I highly recommend that you read her post: What do Boards Have to do with Nursing?  And if you have never considered serving in this capacity, think about it now!  We need to be manifesting nursing everywhere – at the bedside, the chairside…

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A Broken Man Who is Hard to Forget

Richey rolled himself in a manual wheelchair into the exam room of the spinal cord clinic for the first time on a warm spring day in April. He managed to lift his quivering right arm to shake my hand. I was the new nurse practitioner in charge of his care. He had some ability to walk but he used the wheelchair to maneuver the halls of the VA. Luckily, he could schedule a hospital van to drive him back and forth to appointments. Having a spinal cord injury proved to be an advantage in the system.

Richey’s dirty blond hair stood in tuffs on his head. Dressed in jeans and a T-shirt, he could have passed for eighteen but in reality he just turned thirty, had an ex-wife, two preteen girls, and a few years of homelessness under his belt.

“What are all these scars on your abdomen?” I had asked.

“All the fights I had growing up,” he said. “Always in fights.”

When I met him he was living with his brother, his brother’s wife, and their young daughter. His brother was planning to leave for Iraq and his wife would move in with her family, so Richey decided to move back with his mother.

“Don’t do that, you’re crazy,” Richey’s brother told him. But Richey figured that his mother tried her best when they were growing up. He would give her a second chance. Plus, he said he would be near his ex-wife. He wanted to reunite with his girls.

Richey couldn’t get out of his own way to avoid trouble. He had a long history of drug abuse and alcoholism. He saw evil intent in everyone he dealt with. He could worm his way into a confrontation by just looking at a person. No one respected him. Not one person was supportive.

Richey hated our physician but he seemed to tolerate me. Most of the spinal cord patients flattered me because I had the prescription pad. They had pain and needed medication. Like all my patients, Richey signed a contact to submit to random urine testing. The first sample tested positive for marijuana along with cocaine.

“Knock off the cocaine,” I told him and added that I would look the other way with weed. Most of the spinal cord patients liked marijuana because it helped with spasms and improved their appetites.

Richey wasn’t too different than the spinal cord guys I cared for—“broken men” I called them. They had no incentive to look back and try to figure out what happened to turn them into the non-functioning adults they had become. They had no insight, no imagination, and no drive to make changes.

Richey’s problems revolved around his perception of not getting any respect. The receptionist in the x-ray department didn’t respect him so he didn’t get the x-ray I had ordered. The night nurse didn’t respect him so he left the rehab center I had worked so hard to get him into. Maybe she was mad that he broke the rules by wandering outside after hours, peeing in the bushes, falling down afterwards, and unable to get himself up until he was found in the morning. His mother didn’t respect him so he left her and went to Florida to live with an estranged sister who didn’t respect him so he went back to live with his mother who I found out used drugs and let him drive her car that he was physically challenged to drive in the first place. I suspect that if a policeman had stopped him, that policeman wouldn’t respect him for driving without a license.

His ex-wife didn’t respect him for having an affair. Nor did she respect him when he drove home with his ladylove in the front seat on the day she, his wife, was in the hospital giving birth to their first daughter. During that drive Richey flipped the truck over, his girlfriend was fine but he fractured his spine.

I have long forgiven myself for not being able to help Richey recognize that his actions caused most of his problems but I still think about him after all these years.

Nurses Save Lives

 

 

What a pleasant surprise to read that nurses save lives (italics mine) in a news article yesterday, September 21. Unfortunately, the story was not a happy one. The Raleigh, NC News & Observer detailed the memorial service for the crew of a Duke Life Flight Air Ambulance that crashed on September 8 killing all aboard: pilot, patient and two flight nurses.

“Like all medical personnel at Duke, Life Flight’s Crew ‘have a strong desire to save lives (italics mine),’” said Irene Borghese, program director. She goes on to say “what sets this group apart is their desire to do so (save lives) while putting themselves in harm’s way and without the safety net of an entire health care team . . . They simply depend on each other.”

What she is saying is that the nurses can rely on their own knowledge and expertise when they deal with difficult patient problems on a flight mission and not have to follow doctor’s orders, although there probably are protocols when needed.

The nurses who died, Crystal Sollinger and Kris Harrison, had worked together on a flight “that wound up saving the life (italics mine) of an infant . . .that baby is now 3 years old, and her family brought her to” the service.

We all know that in most instance nurses are not recognized for the intelligent, caring and competent health care providers that they are.

In a post I wrote in February 2013, Businessweek reporters gave doctors credit for caring for Hillary Clinton while she was admitted to the hospital when she had a blood clot. Nurses were never mentioned. I can’t imagine a doctor was around to do vital signs on the night shift.

Thank you to Ray Gronberg and Tammy Grubb, the authors of N & O piece, for giving credit to Crystal and Kris for doing what they really do: save lives.

 

 

 

 

 

 

 

 

Getting on the Bus

This post appeared in two parts on September 8 & 20, 2013.

 

The first night in a hotel room in Estoril, Portugal, my heart, flipping about in my chest, jolted me awake. Thump. Thump. Thump. Silence. Then a rush of horses’ hooves clopped on my ribs. Trying to ignore my heart’s gymnastics, I tried to go back to sleep but the Mariachi band playing under my ribs demanded my attention. Pressing my fingers into my wrist, I palpated the same irregular rhythm. Besides a touch of anxiety, I felt fine. No chest pain, no shortness of breath, no dizziness, no nausea. Then my bladder upstaged my clinical observations. Damn.

Slowly, I rose and sat on the side of the bed, careful not to disturb my husband who slept beside me. I waited to pass out. When that didn’t happen, I shuffled in the dark, feeling my way along the wall, to the tiny bathroom.

Successfully back in bed without tripping, falling, or fainting, jet lag eased me into slumber.

The next morning, I awoke to the same sensation in my chest. More alert than the night before, I diagnosed the uneven heartbeat as atrial fibrillation. A geriatric nurse practitioner until my retirement three years ago, I had treated many patients with this condition—its occurrence increases with age. A fact I couldn’t ignore.

I remembered the day before as my husband and I explored the neighborhood around the hotel we had walked past a medical clinic. Through the large glass window, I saw several people sitting in a waiting room, some reading magazines, not unlike our clinics back home. I had no desire to seek help there. I didn’t speak the language, and who knew how advanced medical practice was in Portugal? Besides, I was counting on this event ending soon.

Getting ready for the day’s adventure, my husband slipped a sweater over his head as I laced my shoes. “By the way,” I said, “I am having some a-fib. It’s nothing serious and I suspect it’ll end on its own. I just want you to know, in case I pass out, get an ambulance and tell the medical folks what’s wrong with me.” I made eye contact. “A-fib, got it?” My husband of forty years knew better than to question me, and nodded. I figured he was happy to put off a deviation in our itinerary—his controlled persona would be spared a chaotic scene.

We rode the elevator down to the lobby, queued up with our tour group and boarded the bus to Cabo de Roca. I grabbed a window seat. The vibrant, coastal city gave way to dry grasses clinging to rocky cliffs. I slipped down in my seat and put my fingers to my neck, checking my carotid pulse. The irregular rhythm ticked off around one hundred beats per minute. No too rapid to worry me—yet.

After a couple of hours, the light blue sky became cloudless as we headed into thinning air. Would the high altitude affect the rhythm of my heart? Would my pulse become so erratic that my blood stagnated, forming a clot that would migrate to my brain and spawn a stroke? My husband remained deep in his book. Or was he consciously ignoring me? The medical clinic near the hotel began to look inviting. And very far away.

The bus turned into an empty parking lot. We arrived before the Japanese tourists. My husband was the only one who headed over to the one-story building that stood at the far end of the lot where one could obtain, for five Euros, a certificate validating that one had stood at the westernmost point of continental Europe. The others headed to the bathrooms or the gift shop.

I stepped off the bus last. I felt something strange. Or, rather, I felt nothing. My heart had stopped. No, it just felt that way with the prancing finally gone.

Cabo de Roca

My chest was silent. My pulse was regular. The air smelled cool and crisp.

Released from potential calamity, I dashed off to find my husband.

When we returned to the States, my internist insisted I wear an Event Monitor: electrodes attached to my chest at one end and at the other end to a plastic box that would hang around my neck for a month. When I noted any flip-flops from my heart, I was to depress the start button and the monitor would record the “event.”

During the first week, after I wrestled with the monitor to find a comfortable position in bed, I settled into sleep. My heart, booming loudly in my ears, jarred me awake. I pressed the record button and the monitor gave off a high-pitched sound and began taping. As instructed, I lay still. When the whining stopped, I stumbled out of the bedroom to call the toll-free phone number.

The nurse talked me though the process of sending the recording across the phone lines. I hung up, relieved that she didn’t tell me to go directly to the hospital, as happened with my friend, Norm, after his first submittal. He was sent to the emergency room immediately. A pacemaker was implanted in his chest the next day.

I reassured my husband, who woke up during the taping and trailed after me, concern covering his face. We ambled back to bed—him to sleep and me to await any further malfunctioning of my heart.

Three weeks later, I mailed the monitor, wire, attachments and unused batteries back to the company. I wouldn’t miss the nightly struggle to sleep with a rigid box digging into my ribs. Or fear of the monitor beeping at inappropriate times during the day. Or most of all, the constant state of surveillance for any twitch in my chest.

The only two episodes I had during the month were not atrial fibrillation but sinus tachycardia: a regular, rapid heart rate that’s not life threatening. Wearing the monitor for a month seemed too much of an inconvenience for such a paltry yield.

No doubt there will be other assaults to my aging body, mildly annoying or life threatening. The trick is to know the difference: whether to stay back and seek medical care or take a chance and get on the bus.

SaveSave

SaveSave

Don’t Question the Doctor

My friend Lois and I were talking on the phone the other day. We both graduated from diploma nursing schools in the early 60s. It was a time when the nurse was considered the “handmaiden” of the physician. We played the Doctor-Nurse Game* and even stood up when a doctor entered a room. Feeling powerless to confront their authority, not surprisingly, caused us to harbor much resentment towards the medical profession over our long nursing careers.

I told Lois that my volunteer work at a local hospital has exposed me to the improved interactions between nurses and physicians. Of course, having more female physicians has leveled the playing field somewhat and the emphasis on “team” encourages the professionals to respect and work together to care for the patient. I have fresh insight into the challenges physicians face in the health care delivery system that restrict their practice and autonomy. While I do feel more sympathetic toward physicians, I cannot forget the unbalanced relationship nurses once endured.

 

Here is an example from Lois’ book, Caring Lessons.411isrlw3gl-_ac_us320_ql65_

One afternoon while making rounds, I dashed in to see, Mr. Barnes, my last patient, in 236-1, the triple ward next to the nurses’ station. He smiled when he saw me. “I’m going out for dinner tonight. Dr. Jericho is picking me up at five.”

“Oh? I didn’t know. He didn’t tell us at the desk,” I said, scanning his Kardex card in the vertical file positioned on my left arm. “I’ll check on it.”

Back at the nurses’ station, I checked the doctor’s order sheet for Mr. Barnes. Hospital policy dictated that patients could leave hospital grounds only with written orders from their attending physician. Dr. Jericho was not the attending physician; he was a personal friend. And there was no written order.

I faced a potential explosion. Dr. Jericho’s capacity to be short-tempered was well-known to the nursing staff.  We’d each had our experiences. None of us liked it, but we felt powerless to do anymore than endure. And I didn’t need the problem right then: I wanted to give report on time and get home on time, once.

I dialed his office. “Hello, Dr. Jericho, this is Mrs. Roelofs on Hall Two. Your friend, Joseph Barnes, told me you were picking him up for dinner.” I swallowed hard and took a breath. “I see no written order covering this leave. I’m calling to see if you’ve run this by his attending, Dr. Acorn.”

He barked into my eardrum. “I don’t need to check anything out with anybody. Do you hear me? It’s none of your business….who is this again? What’s your name?”

“Mrs. Roelofs. Head nurse. Hall Two.” I forced my voice to sound strong.

“I’m coming right over to clean your clock,” Dr. Jericho yelled into the phone.

My head and heart spun wildly into one big tuft of fear that settled in my throat. I raced to a friend working on the ward at the other end of my floor. We schemed to hide me on that ward when Dr. Jericho arrived. Then we stationed lookout nurses. Minutes later I got the message. I ducked into Room 214, a five-bed room on East, and hid behind curtains drawn around a vacant bed. When Dr. Jericho arrived, my cohorts told him I was off the floor on an errand. He strode into my nurses’ station across from Room 201, parked himself on my desk chair, and bellowed, “I’ll wait.”

When I was a student nurse a few years before, I had scrubbed to assist Dr. Jericho in surgery. He became irritated with something and kicked a metal wastebasket across the room. Anesthesia saved the patient from being startled off the operating table. However, my nerves, as a novice, vibrated with the intensity of the metal clanging against steel and tile. Now my nerves were vibrating once again.

Suddenly, my friend peeked around the curtain, wearing worry on her face. “He won’t leave until he sees you. He’s camped out. Slicked back hair, black suit, green paisley tie, and all. You better come.”

I returned to the utility room on my ward with its steel cabinets, stowed commodes and IV poles, soaking instruments and thermometers, and corner hopper – a large square toilet-like bowl for rinsing bedpans. Standing in the doorway to the adjacent nurses’ station, I said as confidently as possible, “Dr. Jericho, I’m back. I understand you want to see me?”

Dr. Jericho launched to a standing position. “You bet I do. Who do you think you are to question what I’m doing? To tell me I need a doctor’s order to take my friend out for dinner?” His words torpedoed through the nurses’ station and up the ramp to pediatrics.18064403-angry-doctor-in-glasses-with-notebook

He stomped toward me. I backed away, inch-by-inch, until I was flush with the hopper. One more step and I’d plop into hopper water. I was trapped. Only the smothering smells of disinfectant separated us. “It’s my responsibility to see that hospital policy is followed, sir,” I said. My breath stopped momentarily.

“Who are you to tell me what hospital policy says? You, young lady, are never to question me again. Do you understand?”

His words slapped my face like sleet on a winter walk. I could have punched him – he was close enough – but I thought better of it. “Yes, sir.” I held back a salute that he seemed to demand. He turned, clicked his heels, and marched out, as if on a military drill.

My meds nurse, LPN, and aides crowded into the small nurses’ station. “What happened? What’d he say? I’ve never seen him so mad. At least not this week.”

“Oh, the usual Dr. Jericho stuff. Nothing new.” I said, trying to sound nonchalant with a heart rate of over a hundred.

Reaching for the desk phone, I glanced at a list of phone numbers and dialed Mr. Barnes’ attending physician. He gave me the order. Why hadn’t I called him in the first place?

I determined never to let a doctor’s behavior intimidate me again.

Caring Lessons: A Nursing Professor’s Journey of Faith and Self, Lois Hoitenga Roelofs, 2012, pp 49-50

 

 

* Doctors and nurses: new game, same result

Mark Radcliffe, deputy features editor

BMJ. 2000 Apr 15; 320(7241): 1085.

“In the beginning the relationship between doctors and nurses was clear and simple. Doctors were superior. They had the hard knowledge that made ill people better. The nurses, usually women, were good but not necessarily very knowledgeable. They were in charge of folding pillowcases and mopping brows. . . .

In 1967 Dr Leonard Stein first outlined the doctor-nurse game. He said that the interactions between the two were carefully managed so as not to disturb the fixed hierarchy. Nurses were bold, had initiative, and were responsible for important recommendations. While being bold, however, they had to appear passive. In short, nurses were able to make recommendations as long as they made it look as if they were initiated by doctors. So the nurse was responsible for the wellbeing of her patients and the nourishment of the doctors’ sense of professional self.”

Cardiac Advances Versus Patient Benefit: A Moral Dilemma

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My story, Closing the Door, recently published in Stories That Need to be Told: A Tulip Tree Anthology, tells of the emergence some fifty years ago of cardiac catheterization, artificial heart valves and cardiopulmonary resuscitation and how I, as a young nurse, had to make sense of the advancement of technology versus patient benefit.

This story is especially significant to me because just six months ago my husband had open-heart surgery replacing two valves with biological valves. I witnessed, first hand, the tremendous advances in cardiac surgery and treatment.

 

CLOSING THE DOOR

I gagged on the alcohol fumes as I carefully measured out sixty milliliters of Black and White Scotch into a medicine glass. Balancing the small plastic tray with a pack of Lucky Strikes and the Scotch on one hand, I locked the door to the tiny medication room with the other. Then I went in search of Charlie Hobbs.

A plume of tobacco smoke drifted from the patients’ lounge. A ripped vinyl sofa and two orange bucket-like chairs lined the walls. The sole occupant was a middle-aged man hunched over a jigsaw puzzle on the card table. Charlie Hobbs had been admitted to the research unit on the third floor of the city hospital with just the clothes on his back. Every day he wore the hospital issued striped robe and pajamas. One of other staff nurses had donated slippers.

I gazed down at the top of Charlie’s wild red hair. He shuffled jigsaw pieces by day and watched television by night, all a maneuver, I thought, to keep human interaction at bay. No one ever visited him. Did he even have a home to go back to?

“I got to get me another puzzle,” he said without looking up. “This here one is almost done.”

At twenty-three, and a nurse for just two years, I vacillated between professionalism and irreverence. At times, I imagined myself the airline stewardess I had always wanted to be. Coffee, tea, or me? This day I was a Playboy Bunny as I bent at the knees, stretching to place the drink in front of Charlie, while his blue eyes riveted on my imagined cleavage. But Charlie’s eyes fixed solely on the amber liquid. Not once in the past four weeks had he acknowledged me, the young nurse in a starched white uniform with thick support hose, and practical shoes. An unlikely dispenser of booze and butts.

Charlie snuffed out the remnant of his cigarette into an overflowing ashtray and reached for the drink.

Harold Clark’s research money supported Charlie’s hospital stay. Dr. Clark needed recruits who would agree to have a cardiac catheterization in order to see the effects, if any, that alcohol had on their hearts. Cardiac catheterization was the latest tool of the sixties to measure heart function. This new procedure carried a high risk of injury, and even death.

Dr. Clark had scoured the downtown bars searching for men who drank excessively. On a warm autumn night he had gotten lucky. Charlie seized the carrot: a roof over his head, three squares a day plus free liquor and cigarettes. He agreed to live on the research unit for a month, and then undergo a cardiac catheterization.

I carried the empty medicine glass and the tray back to the nursing station. How could Charlie drink alcohol at nine in the morning? Or all day long, for that matter? What would make a man so desperate that he would consent to undergo a procedure that might kill him?

Even though I didn’t particularly like Charlie, there were times when I placed the Scotch in front of him that I wanted to nudge him, and jerk my head towards the exit sign at the end of the hallway. Get out, Charlie. The catheterization isn’t worth all the free alcohol and cigarettes. But I didn’t have the audacity to undermine Dr. Clark’s research, no matter how conflicted I felt.

In the small sink in the medicine room, I rinsed out the glass and turned it upside down to dry on a paper towel that rested on the narrow windowsill. Still thinking of Charlie Hobbs, I started down the hall to check on my other patients.

Nellie Mineo waved to me from the doorway of her husband’s room. She looked like the Italian housewife that she was: salt and pepper hair piled in a bun on the top of her head. A well-worn cardigan sweater covered her simple cotton dress. When I walked toward her, she grabbed my hand. Behind her I could just make out her husband’s outline under the starched white sheets.

“He seems worse,” she said, rubbing my hand in absent-minded distraction. “Promise me you’ll stop in before you go off duty today.”

The Mineos had known the chances weren’t in their favor when they first met with Dr. Clark to discuss replacing Joe’s diseased heart valve with an artificial one. He was so short of breath that he could hardly talk, much less continue working in the family grocery store.

In the operating room, Dr. Clark had removed the incompetent valve, and slipped the artificial one, a silastic ball encased in metal cage, into the excavated space. The ball-valve clicked audibly. Not a pleasant side effect.starr-edwards-mitral-valve

After my regular tour of duty, I rode the elevator to the fifteenth floor, the surgical unit, and worked overtime as Joe’s private nurse. He reminded me of my Uncle Tony with olive skin, dark eyes, and soft smile. At first things looked great, but soon Joe developed a cough and a fever. His legs swelled. He had difficulty breathing. Diuretics worked for a while. Antibiotics failed to prevent an infection. His once muscular body had shriveled into sagging skin covering a bony frame. Although the valve was being rejected, it continued to click on.

“Stop and see me before you go off duty,” Nellie repeated. I nodded. Only then did she loosen her grip on my hand.

At the end of the day, as I flung my coat over my arm, I heard a racket from the patients’ lounge. Charlie stomped past me, head down, and fists clenched. “I’m outta here.”

“What happened?” I asked the nurse who jogged after Charlie.

“Charlie kicked over the card table. For no reason I could see.” She shrugged her shoulders, and continued on.

Nellie watched the commotion from the other side of the hall. The Mineo’s large, gregarious family resembled my own extended Italian family. Visitors came and went at all hours, but that day only Nellie stood guard. When I approached, she pulled me into her husband’s room, grabbed my coat and purse, and clutched them against her body. From behind her I could hear Joe’s wet bubbly breaths, which barely muffled the click of the valve. Even in my short stint as a nurse I recognized the rancid smell of impending death. I wanted to escape the hopelessness of Joe’s futile struggle, but Nellie moved her face closer to mine.

“He’s dying,” she whispered.

She swallowed hard as if to stop herself from crying. “I don’t want him resuscitated. Please stay with us. Don’t let them resuscitate him.”

Nellie had witnessed plenty of resuscitation attempts as she lingered outside her husband’s hospital room day after day. Cardiopulmonary resuscitation was so new that all patients were candidates. At the first moment a patient stopped breathing, we leapt into action. We flung him to the floor and straddled him. We thumped the sternum with the side of our fist, then breathed frantically into his mouth. Pumped on his chest. We worked until we were exhausted. In most cases the patient died anyway with fractured ribs, and a lacerated liver.

Nellie kept her gaze on me; her dark eyes pleading. What would I want for Uncle Tony? A quiet death, or zealots in white coats beating on his chest? What should I do?

Charlie’s voice boomed from down the hall spewing curses. Perfect timing. Charlie would leave the hospital AMA—against medical advice—right before his scheduled catheterization. He wasn’t as clueless as I had thought.

Hopefully, Charlie would distract the staff long enough for Joe to die. My heartbeats kicked up a notch. How could I ignore Nelly’s plea? I reached over and slowly shut the door.

Nellie’s hold on my coat and purse relaxed, and they slid to the floor. Wordlessly, she settled in the chair next to Joe’s bed, lifted his limp hand onto her lap. I commandeered the chair by the door: the sentry blocking the enemy from entering.

I had seen dead people before but never lingered for that final breath. The valve and the minutes clicked on. The lapses between Joe’s gasps for air stretched farther apart. Just when I thought he had quit breathing, he gulped for air. I silently cheered him on. Die Joe. Come on, get it over with.

I sat knotted tight. How would I explain the closed door to a co-worker who decided to check on Joe? Or the fact I was still there after my shift had ended?

Finally, Joe’s noisy breathing ceased. Then the mechanical valve stopped clicking. The silence sounded thunderous as I grappled with the fact Joe had actually died. I walked to the bed to see his torturous face frozen, his dark hair matted with sweat, his mouth agape. His open eyes stared at nothing. I placed my hand over Joe’s clammy hospital gown. No movement in his chest. No heart thumping against my palm. As I smoothed down his lids, Nellie gripped her husband’s hand to her breast and sobbed softly.

While I felt relief that Joe had died with his wife by his side, each footstep by the door made my heart flip.

“I really need to leave, Nellie.”

Tears trickled down her cheeks. She placed Joe’s hand over his chest before she rose from the chair to embrace me.

“Thank you,” she said, her voice cracking. She cried on my shoulder as my own tears fell. Then she pulled away, and sat back down next to Joe, taking his hand again.

Grabbing my coat and purse from the floor, I wiped the moisture off my face with the coat sleeve. I cracked open the door, and glanced up and down the empty hallway. I forced myself to walk leisurely toward the exit.

Nellie waited for the evening nurse to discover Joe dead in the bed.

The floor was unusually quiet. The medication door stood ajar in the nursing station. I had no intention of poking my head inside, and saying so long to the evening nurse. Just a few more steps and I would be in the clear.

I turned the corner of the white tiled hallway, my thoughts back in the room with Nellie and Joe. My body jerked as Charlie Hobbs blocked my way.

“Hi,” he said as if we were old friends. “I’m leaving.”

He sported a bright green jacket that covered the rumpled clothes he had worn when first admitted. “Borrowed this from the guy in the next room,” he said, noticing my eyes on the jacket. “I’ll return it.” I nodded even though I knew the coat would never make it back to its owner.

“I ain’t got no money on me. Can ya spare a buck? I’ll pay ya back.” He shifted his feet nervously waiting for my answer. For a fleeting moment, I thought to try to persuade him to stay. But that would have been hypocritical. I reached into my purse knowing he would head for the nearest tavern, and never give a second thought to repaying me.

“Thanks,” Charlie mumbled, shoving the dollar bill into the pocket of the purloined jacket. He turned abruptly, and disappeared though the doorway under the exit sign.

While I jogged down the three flights of stairs following behind Charlie’s footfalls, I attempted to justify my behavior. Frightening to me was how quickly I intervened for my patients without foresight into the repercussions.

However, I felt positive that Charlie had planned all along to leave the hospital before the catheterization. Not giving him the dollar wouldn’t have made a difference. And who would question that my closing the door to Joe’s room to allow him to die naturally had violated any ethical rule? Even if I didn’t intervene, the chances that anyone would get past Nellie Mineo to resuscitate Joe seemed unlikely.

How could I have realized that over the years I would continue to struggle with knowing when to step back, and when to dig deeper into my patients’ psyche. How to be empathic and not sympathetic? How to balance cool detachment with overbearing involvement? It was just the beginning. There would be many choices throughout my long nursing career that would test my allegiance, and strain my conscience.

Before I reached the last flight of stairs, Charlie had flung open the door to the street, and let it crash behind him.

The Gray Area of Nursing: Being Uncertain of One’s “Moral Role.”

Here’s a great example how one nurse saved a patient’s life.

American Journal of Nursing
American Journal of Nursing

Speaking Up to Save a Life

by

Diane Szulecki, Associate Editor

American Journal of Nursing

October 2016 – Volume 116 – Issue 10 – p 68–69

 

 

Abstract

 

A nurse’s advocacy alters the path of a patient with locked-in syndrome.

On a winter day several years ago, critical care nurse Katie L. George began her first of four day shifts in a row. Among her tasks was taking over the care of Ms. A., a young woman who had a traumatic head injury after being involved in a car accident. Ms. A. had been sedated for several days to allow for intracranial pressure monitoring; her fiancé had stayed in the room with her the entire time.

Katie L. George
Katie L. George

At the start of George’s shift, Ms. A.’s physician decided to stop her sedation so she could undergo a neurologic exam. Within an hour, Ms. A. opened her eyes and her fiancé jumped up, grabbed her hand, and began talking to her. But the initial assessment George conducted yielded troubling findings: Ms. A. had no spontaneous movement and her heart rate didn’t elevate in response to noxious stimuli. She appeared, however, to be looking around the room and tracking George and her fiancé.

Ms. A.’s physicians repeated the assessment and arrived at the same conclusion. Magnetic resonance imaging revealed that she had sustained a severe C2 fracture in the car accident and that her spinal cord was nearly severed.

Ms. A.’s parents, who lived abroad, were en route to the hospital but wouldn’t arrive for another day. In the meantime, Ms. A.’s fiancé stayed by her side and quickly established a way to communicate with her. He would read her the title of an article from her favorite magazine, then tell her to blink once if she wanted him to read it to her or twice if she wasn’t interested.

“Throughout the day it became clear to us that she absolutely could understand what we were saying,” said George. Ms. A. was suffering from locked-in syndrome—a condition in which the patient is conscious and certain eye movements remain functional despite full body paralysis. When her parents finally made it to her bedside the following morning, they faced devastating news. The attending physician informed them that because of the severity of Ms. A.’s injuries, she was unlikely to regain movement of her extremities. She would always be dependent on a ventilator and she had a high risk of dying within a year from complications of immobility such as pneumonia.

Ms. A.’s parents were advised to take some time to think about how to move forward. The next day, they decided to have their daughter withdrawn from life support. Despite Ms. A.’s apparent cognizance, George said, “I think her family was trying to do what they thought was best. In their minds—and understandably so—they didn’t want to put her through this.”

But, according to George, Ms. A’s fiancé pushed back on his future in-laws’ decision. “This isn’t right—I think she’s in there, and this should be her call to make,” he said to George. George agreed, and scrambled for a solution: Ms. A. was due to be removed from life support that afternoon.

First, George discussed her concerns with the attending physician. He agreed with her, but emphasized that since there was no way to determine Ms. A.’s mental capacity from a legal standpoint, the decision of whether to continue life support remained with her family.

Despite the physician’s response, George was determined to find a way to help give Ms. A. a voice in deciding her own fate. So she reached out to a colleague in palliative care, who referred her to a speech pathologist. Over the phone, the pathologist confirmed that Ms. A.’s capacity could, in fact, be legally validated through the blinking of her eyes.

“At that point I went to the attending and the resident and said, ‘Here are the calls I’ve made; we can prove her capacity by doing this,’” said George. “They weren’t happy that I had persisted after they’d said no, but they were receptive.”

A plan was made for Ms. A.’s parents and fiancé to gather in her room along with her physicians, a chaplain, and George, her nurse. Once assembled, they explained her condition and prognosis to her, and reassured her that she wouldn’t be in any pain if she chose to discontinue life support. She was instructed to blink once if she wanted to continue life support and twice if she preferred not to. Everyone in the room let out a collective gasp at Ms. A.’s response: “She blinked once and opened her eyes so wide—it was very clear what she was telling us,” recalled George.

After that, the situation resolved uneventfully. Ms. A.’s parents supported her choice, and the decision to continue care was formally made. Eventually, she was transferred to a rehab facility in another state. It was the last George would see of her patient for a long time.

A few years later, George was at work when one of the attending physicians who had cared for Ms. A. called her over. The physician had come across a recent video of their former patient.

George watched the footage, in shock. Ms. A. had made enormous progress in her recovery: she was now able to move most of her extremities and no longer required a ventilator or a feeding tube. The footage showed her dressing herself, using various tools to help her perform basic tasks, and getting around in a motorized wheelchair. Her mental capacity was fine, and her fiancé was still by her side, now as her husband. “You did this,” the physician told George. “She’s alive because of you.”

Looking back on the situation, George said she never doubted that getting involved on behalf of her patient was the right thing to do, despite facing pushback from some of her colleagues. “This was something that was way too wrong not to stand up for. I was sick knowing what would take place that afternoon. It really made me feel like, ‘OK, this is what we have to do.’” Taking a stand was intimidating, she said, but her instinct reassured her. The experience exemplified what she called the gray area of nursing: being uncertain of one’s “moral role,” and wanting to tread carefully.

George says the experience of advocating for her patient and witnessing the rewarding results has kept her driven, both personally and professionally. “It’s given me the motivation to keep challenging things even when they’re tough, and in my day-to-day patient care, not to sit back if I feel something is truly wrong,” she said. “You can’t pick every battle, but you need to pick the ones that matter and stand up for what’s right.

 I Am Grateful to the Nurses

In 2013 I toured the new intensive care units back at the hospital where I volunteer. At the time I was acutely aware how outdated my nursing skills were and realized that I wouldn’t even be safe to flip on a light switch. The state-of-the-art machines were daunting. I never thought that three years later I would have a family member, my husband, in the new unit.

It did help my anxiety that I knew what the ICU looked like. I remembered there was a sort of bench under the window—all the rooms had a window—that could be converted into a bed for family to stay over. I had decided before Ernie’s surgery I would spend the night and as many nights with my husband as needed. So many errors occur in hospitals. In my mind, hospitals are not safe places to be sick. I would be the sentry for safety.

After my husband’s six-hour surgery, two heart valves replaced, my daughter and I found him in a high-tech Hill-Rom bed, unconscious, intubated, and surround by snakes of IV tubing and lines attached to various machines.Hill-Rom bed

The nurse caring for him introduced herself and gave us a “tour” of the landscape, that is, what medications he was getting, what fluids were draining out of what orifices and what the monitors were monitoring. The breathing tube, she said, will come out soon and he would be awake and alert tomorrow. Really?

That was when I decided to spend the night in a hotel room. Fatigued from worry about the outcome of the surgery, I knew a good night’s sleep would be more helpful than spending the night with beeping machines. Besides, I felt an immediate sense of comfort knowing that Ernie would be getting excellent care.

As I look back on this event, I am reminded of the post I wrote on February 23, 2014 about Dr. Arnold Relman, the former editor of The New England Journal of Medicine. He had just turned 90 and fell at home, cracking his skull and breaking three vertebrae in his neck. After he had made a full recovery, he confessed that he had never made the connection between good nursing care and the patient’s outcome.

I had never before understood how much good nursing care contributes to patients’ safety and comfort, especially when they are very sick or disabled. This is a lesson all physicians and hospital administrators should learn. When nursing is not optimal, patient care is never good.

This he found out at the ripe old age of 90!

The next morning finding my husband alert and sitting up in a chair beside the bed without his breathing tube and looking surprisingly good brought me close to happy tears.

It’s been two months since Ernie’s surgery. He is getting better, slowly, every day. I continue to be impressed with the surgeon and his team that stopped my husband’s heart, touched, repaired and restarted it with skill and accuracy. They bring big bucks into the hospital coffers. They get the accolades and attention. At the end of the operation, they take off their surgical scrubs. Go home. Have a good meal. Get a good night sleep. But it was the nurses that watched my husband’s battered body around the clock, monitored his fluids, medicine, breathing, pain and his heart and put him on the road to recovery.images

And I am grateful.