February 17, 2017

Nurse Writers: Telling Your Patients' Stories

Nurse Writers: Telling Your Patients' Stories

By Anne Devine, MA, BSN

As a nurse turned writer, I often think back on patients I cared for in my nearly 10 years of clinical experience. What do I remember about my patients? Is it the diagnosis and how it was treated? Only rarely. It is the person’s story or the life lesson they taught me that I remember. Working with individuals within their unique milieu of home, family, and community gave me pearls of wisdom that I still carry with me today.


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Personal Is Powerful

While nursing in a Midwestern intensive care unit (ICU), I worked with critically ill surgical and trauma patients in an academic center serving a large rural area. Our ICU beds held people of all sorts: a lawyer whose car crashed into a tree, a farmer fatally sliced in the powerful blades of a tractor-pulled brush hog, a young lineman rendered quadriplegic by a fallen live wire, and an African American teenager whose life was cut short in a multiple car collision. All these people hold an indelible place in my memory, even though as an ICU nurse I commonly didn’t get to know how patients’ stories turned out once they left the unit.

Years later, in a state far away from my native Missouri, I experienced the opposite end of the nursing spectrum, in community health. As a visiting nurse in Seattle’s central core, and later in Phoenix and the surrounding Maricopa County desert, I met people on their private turf, at home. In one day I might care for a retired sailor living in a single-room-occupancy (SRO) hotel, an extended immigrant family overwhelmed by a new diagnosis and learning a new language and culture as well, and a wealthy retiree with limited social support in a beautiful home overlooking Lake Washington.

Although I tried to make every patient feel special, some became my favorites. One such patient, a tiny, 90+-year-old African American woman, and a former midwife in the South peered at me through her front porch window, afraid of the stranger at her door. After her son introduced me as someone there to help, she gradually grew more comfortable with my weekly visits. One day as I took her blood pressure she muttered quietly, “Um, um, um. I never thought there’d be a white nurse waitin’ on me.” Those few words informed me about the changes she had seen in her long life, not only in healthcare but in our society as a whole.

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An 86-year-old gentleman residing in a low-income apartment building lived with debilitating rheumatoid arthritis and congestive heart failure. His life severely limited by poverty and restricted mobility, he talked about the heartbreak of losing touch with his family. As a young person still learning about family dramas, I wondered how his children could forsake such a sweet man. One day I walked into his apartment to discover he’d been on a week-long alcoholic binge. I’ll never forget the condition I found him in or the disarray and filth of his apartment. My eyes opened to the devastation alcoholism can bring to health, lifestyle, and relationships.

Sometimes nurses sense a connection with a patient that we don’t fully understand at the moment. As a visiting nurse in Phoenix, I saw a patient in his late 50s diagnosed with metastatic prostate cancer, living with his wife in a prosperous neighborhood in the shadow of Camelback Mountain. This very private and independent couple requested visits just one day a week. The wife said, “He looks forward to the time when ‘our Annie’ visits.” (To my surprise, “Our Annie” was his nickname for me.) When the patient passed away and I read his obituary, I learned that he was a former corporate giving executive committed to community service and social justice issues. I more fully understood why we “connected” in a previously indefinable way.

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Storytelling And HIPAA Restrictions

Nurses today are bound by strict HIPAA privacy and security rules (Health Insurance Portability and Accountability Act of 1996). They can be strictly sanctioned, and even lose their jobs if they violate these rules which help protect the privacy of individuals’ medical records and other personal health information. Not only are nurses bound by HIPAA rules, but many employers also implement additional privacy and confidentiality guidelines about sharing professional and workplace information via social media channels such as Facebook, Twitter, LinkedIn, and others.

If you wish to share a HIPAA-compliant patient story in a work presentation or personal blog, take time to carefully review the information to ensure that it does not contain PHI (personal health information), and to determine if a person could be identified by the information provided. When I was employed in a communications position in a medical device company, I learned to avoid sharing too many descriptive details as well, to protect an individual’s privacy. For example, describing someone in your story as Latino, 57-years-old, divorced, female, and an engineer could result in the identification of the individual. It’s a good idea to have a colleague who is well-versed in HIPAA requirements review your piece as an additional precaution.

Related: True Stories From The NICU: Heartbreaks and Triumphs

The Dramatic And Literary Appeal Of Patient Stories

Contemporary culture is fascinated by the up close and personal – just consider the proliferation of TV reality shows and hits such as This is PBS favorite, Call the Midwife , is loosely based on the memoirs of Jennifer Worth, a woman who practiced as a young midwife in the post-World War 2 slums of London’s East End. The author “picked up her pen” to write Call the Midwife: A Memoir of Birth, Joy, and Hard Times , when she read an article in a 1998 issue of a midwifery journal where the author lamented about the dearth of midwife stories found in literature. Worth’s dramatic and engaging chapters share midwifery stories of love, humor, suffering, and hope that are still relevant today.

A more contemporary work addresses issues of poverty, homelessness, and access to health care. In her memoir, Catching Homelessness: A Nurse’s Story of Falling Through the Safety Net , nurse and now faa culty member, Josephine Ensign, shares the story of her work with homeless populations in the American South at the dawn of the AIDS epidemic. As a neophyte nurse committed to helping the homeless in her native Virginia, Ensign practiced in a newly-established clinic for the homeless in the early 1980s. Little did she realize that a series of life misfortunes would eventually lead to her own homelessness. Her courageous, honest story shows how she pulled herself out of the situation to become an even fiercer advocate for some of the most vulnerable in our society.

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What’s Your Nursing Story?

Nurses may think “I’m not a writer,” or “I don’t have time to write!” If a nursing experience stays with you, it may be a sign that it’s good fodder for a story – a pearl of wisdom or life lesson to be shared. Writing may seem painful at first. But as nurses, we are curators of sorts, collecting stories but not always sharing them. Give it a try. Once you pick up your version of Jennifer Worth’s “pen,” most likely a keyboard, you may be amazed at what happens when the words start to flow.

Next Up: A Seattle Nurse Gives Back

Anne Devine, MA, BSN, is a freelance healthcare writer who lives in Seattle, Washington. She has more than 15 years of experience working with employers and clients in the academic, nonprofit, healthcare, and corporate worlds, including a medical device company, online pharmacy, and a variety of startup and software/in-the- cloud firms. With roots in public health nursing, she especially enjoys working with and writing for healthcare organizations and the professionals who keep them going.

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