Nurse recovers from surgery gone bad to shine light on dysfunctional system

By Donna Helen Crisp | 08/18/2016

My inner voice commanded me to write a book.

The editor of Reflections on Nursing Leadership (RNL) interviews Donna Helen Crisp, author of Anatomy of Medical Errors: The Patient in Room 2.
 
RNL:
Donna Helen CrispThank you for writing this memoir. As more people are becoming aware that many patients die tragically each year from preventable medical errors and adverse events in hospitals, your book is very timely. Of your own experience as a victim of medical errors, you write: “No one would ever simply say they were sorry for what happened to me. Had this been otherwise, I probably would not have written this book.” Since you also state that you have forgiven the surgeons and others who caused you great physical and emotional pain, why did you write this book?
 
Donna Helen Crisp:
Psychotic and terrified, I came back to life one weekend in a surgical intensive care unit, after being in a coma for weeks. Within a day, as my delirium began to transmute into reality, my inner voice resolutely commanded me to begin living with this truth. “You must write a book.”
 
Anatomy of Medical Errors bookBut what could I write about? I had no idea why one surgery and one overnight hospital stay had turned into five surgeries and a month in the hospital. I did not know I had lost weeks of my life to a netherworld devoid of awareness. I was oblivious to the large hole in the middle of my abdomen. All I knew was that if I lived long enough, I would write a book about whatever had happened to me, once I figured it out.
 
It was challenging to come home and not be able to move, bathe, dress, or cook. I was in survival mode for many months. Once I was able to hold a pen and write, I began to take copious notes. I made long lists of ways I had suffered, losses experienced, places my body had been damaged. I wrote down all the questions I wanted answered. And I cried—every day, usually in the afternoon. I also wrote down exactly how I remembered the first few moments after coming off the ventilator, when I had experienced inexplicable terror. Those words became the first words of my book.
 
For several years, as my story continued to unfold, I wrote. With time, my sense of purpose became refined and stalwart. I never doubted my resolve, especially after learning that many unsuspecting people were dying every day from unnecessary medical errors, while many more, like me, suffered serious and, sometimes, life-changing complications. I felt a turning point in July 2014, when a U.S. Senate subcommittee, chaired by Sen. Bernie Sanders of Vermont, heard testimony that preventable hospital medical errors constituted the third leading cause of death in the nation—behind heart disease and cancer.
 
By the time I learned that hundreds of thousands of patients were dying every year in our nation’s hospitals due to preventable medical errors and adverse events, I also knew that most people had no idea of the pervasive hidden and denied dangers they faced when they became hospital patients. Eventually, I realized that even credible estimates were likely understated, since there were no codes for deaths caused by medical errors or adverse events for entry on death certificates. Increasingly, I realized I was writing my book for all the patients—both dead and alive—who never learned how medical errors had impacted their lives and caused their bad outcomes.
 
I want to help raise awareness about a national health crisis and shine light on a dysfunctional healthcare system. I hope my book penetrates the pockets of silence that keep patient tragedies undiscovered and never mentioned, even though many hospitals want to keep it that way.
 
RNL:
Skillfully woven throughout the telling of your story about uterine cancer surgery that went terribly wrong is your life story, which includes glimpses into a family that could be described as dysfunctional. Your “troubled childhood” led to a search for purpose and expression that included a wide variety of work experiences and a broad education, including a juris doctor degree. Why did you become a nurse? How has your law education influenced your role and perspectives as a nurse?
 
Crisp:
In my late 30s, I realized I was not going to have a loving marriage and children, so I began to try and figure out what to do with the rest of my life. I had two college degrees and had worked as a social worker, so I considered getting a master’s in social work. I also considered getting a degree in landscape architecture. My grandfather had been a botanist, and it seemed I had inherited his proverbial green thumb. While mulling over my options, I woke up one April morning and heard a voice say, “Go to nursing school.” Because I had never considered working in a medical field, this was a surprise. Then I remembered how, as a child, I had told my father I wanted to be a doctor. He replied that it was not possible because I was a girl.
 
I called the university and learned I had just missed the cutoff date and would have to wait another year to apply. Although I figured my notion of being a nurse would eventually fade away, I began taking non-nursing courses I would need for my new degree, including five lab-science courses. By the time I finished this work, I had submitted my application for the BSN program and was accepted. After being a social worker, legal clerk/writer, singer-songwriter, poet, musician, French teacher, and restaurant waitress/manager, I spent most of the next seven years earning a BSN and an MSN in mental health nursing. Then I did a year of required supervision, sat for a national exam, and became certified as a psychiatric clinical nurse specialist.
 
While still in my 20s, I had earned a juris doctor degree. In nursing school and thereafter, I was often asked why I wanted to be a nurse instead of a lawyer, since most nurse-attorneys went to law school after becoming nurses. Apparently, my path was unique. However, I never questioned my decision. I had spent years learning about my psyche and spirituality. I even considered myself an amateur psychologist. Now I wanted to master knowledge of the physical body—physiology and pathology, health and illness. Nursing was a holistic, patient-centered practice. Nursing was exactly where I needed to be.
 
It was no surprise how much my legal knowledge informed my nursing practice. The first barrier to entering a new profession is often the language. I had mastered legalese, which made it easier to master medical jargon. Instead of looking up “amicus brief” or “interlocutory appeal,” I now investigated words that began with “hyper” or “hypo” and many other words I could not pronounce, much less understand.
 
My knowledge and ongoing love for the law have continued to inform and support me throughout my nursing career of 25 years. Many aspects of the nursing profession are imbued with the law, including policy, procedure, administrative law, liability, protocol, best practice, compliance, safety, and standards of care. 
 
RNL:
You observe in your book that moral distress is common among nurses, doctors, and other healthcare providers, who often “lack the ethical framework to help their patients deal with difficult decisions and life-threatening situations.” How has your knowledge of nursing ethics helped you avoid moral distress in your nursing practice? What would you like to see with regard to ethics in nursing curricula?
 
Crisp:
Before nursing, I earned a law degree. In nursing school, I took an ethics course. Thus, I acquired a solid foundation of basic nursing principles and medical ethics, complemented by my ability to understand the legal system. Added to this mix were my powerful curiosity and critical thinking skills. I knew from the beginning of my nursing career that I would be dealing with moral values—my own as well as those of my patients and colleagues, and I felt prepared to do so.
 
Although medical ethics is integral to the practice of nursing, many nurses graduate and begin their careers with little knowledge of ethical concepts, much less how to effectively apply them in patient scenarios. Other than learning some legal pointers for nursing practice, such as those relating to documentation and liability, nurses may not be prepared to deal with the legal and ethical issues that arise when faced with difficult life-and-death questions. New nurses, still learning fundamental nursing skills, often fail to recognize—much less apply—legal and ethical principles to their patients’ situations.
 
Nurses learn how to address concrete procedures, such as how to change a surgical dressing or adjust an IV pump. But without adequate training in how to work with ethical dilemmas, how can a nurse feel comfortable telling a patient’s daughter: “Your mother is in pain and wants more morphine. The med order allows for a higher dose, but it may compromise her breathing.” Or explaining to a patient: “No one can force you to have this surgery. However, you may die sooner if you do not have it.”
 
A conscious 90-year-old woman is ready to die but lacks the ability to talk, much less pressure her family to follow her wishes as documented in her advance directives. A 48-year-old man with a long history of IV heroin addiction wants and needs pain medication because of internal injuries suffered in a motorcycle accident, but his wife insists he cannot have pain medicine. Without ethics training and experience, how can a nurse discern the threads of controversy and alliance in these scenarios? Without knowledge or confidence to speak up for the patient, how can a nurse maintain the role of patient advocate in such difficult circumstances?
 
When nurses are unable to unravel their patients’ ethical dilemmas, they become frustrated, especially when they witness poor outcomes. A patient receives poor or futile care, and the nurse, unable to intervene, feels worthless. A patient is not told the truth, and the nurse, unable to collaborate with the team for the patient’s benefit, feels weak and ineffectual. A patient suffers from poor communication and care, and the nurse, forbidden to help the patient, feels inadequate. That is moral distress.
 
To provide excellent patient care, nurses need a basic understanding of the meaning and application of medical ethics. They need to know that a patient has a right to self-determination (autonomy) and that a caregiver must answer questions and tell the truth without misleading the patient (veracity). They need to aspire to do what most benefits a patient (beneficence) and respect a patient’s privacy (confidentiality). They need to recognize that caregivers must keep their word, honor their commitments to patients, and, if unable to help a patient, seek assistance, guidance, and authority (fidelity). Finally, they need to understand that a nurse must strive to do what is fair and right for a patient while being mindful that other patients may also need assistance, especially in times of crisis or staffing shortages (justice).
 
Every nursing program should include a required ethics course. Reading and discussing case studies about real ethical dilemmas are very effective ways for nurses to learn about these principles. Students love this kind of learning, because it invigorates and challenges them to think about their future work and how they will respond to patients in difficult moments. After learning about basic ethical principles, new nurse graduates are better prepared and more confident to work in hospitals and other healthcare environments. Hopefully, their workplace will honor, encourage, and support them when they identify ethical problems and collaborate with others for their patients’ highest good.
 
Donna Helen Crisp, JD, MSN, RN, PMHCNS-BC, has been a nurse since 1992. As a mental health clinical nurse specialist in adult psychiatry, she has worked with clients in a variety of settings. In 2006, she became an assistant professor at the UNC Chapel Hill School of Nursing, where she taught numerous courses, including ethics. In 2012, she returned to Asheville, North Carolina, USA, where she works as a nurse and writes about nursing.
 
Anatomy of Medical Errors: The Patient in Room 2, by Donna Helen Crisp
ISBN-13: 9781940446844. Published by STTI, 2016
Price: US $29.95. Soft cover, 228 pages. Trim size: 5 3/8 x 8 3/8
 
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