STORY IN HEALTH CARE AND BRINGING STORY TO PRACTICE
Once upon a time, many years ago, I set out to become a real nurse. I was not only inspired by my mother’s nursing stories, but I loved her nursing uniform, white, crisp and so efficient looking. And so it passed, I did indeed become a real nurse and began to practice nursing and practice and practice in a manner that only young nurses do. I was happy. Time passed and I continued to practice nursing. I became older, got married and had children and continued to practice nursing and practice and practice. It was a very busy time and, in fact, I felt tired and slightly troubled. I continued until one day an unexpected invitation came my way. Come to a story telling class! Story telling; what was it all about? And so I joined that story class. I’m here to tell you that it was nothing less than magical! During that year, I began to learn and tell stories, always drawn to the same kind of story about strong and courageous women who triumphed over all sorts of adversity including powerful spells, evil wizards and even angry husbands. After a while, I took those stories in, I made them my own and over time miraculously transformed my own story. As you might expect, I needed to make a lot of big changes in my life. And so that is just what I did! I made a lot of big changes and all the while I continued to practice nursing and to practice and practice, only with a renewed and hopeful perspective. It was a new story so to speak. And, you know, I was happy again.
My experience illuminates the power of story to inspire imagination, transformation and healing. It helped me to make sense of my life at that time. My current practice as a nurse case manager in a small community hospital often feels ineffective and frustrating; patient care coordination in a setting characterized by a fast pace, frequent interruption, endless diagnostic tests and procedures, and increasing distance from patient and family. Patients are often readmitted to the hospital with the same problems anticipating treatment and recovery; a return to their life. Once again, I feel tired and slightly troubled. It is well timed to begin an exploration of the current practice and theory of story within healthcare, a telling of personal, professional and traditional tales, with my intent at this time to identify how I can best use story to inspire healing within my own practice and to establish my next steps to make this possible.
My inquiry begins with a description of story and its telling. Story telling is an ancient feature of world cultures; the telling and retelling of legends, myth and lore are familiar to us all. It was and continues to be entertaining and provides the framework for meaning in specific cultures and ways of life. Our personal stories also entertain and are woven into the cultural context of our relationships; self, others, community and our larger culture. In addition to entertainment and instruction, stories reveal meaning, provide insight, understanding and an awareness of self, others and events. Stories provide an outlet for emotions, a catharsis and a healthy way to cope. Stories universalize life problems, spark imagination, develop and strengthen connection among groups, teach new ways to think about ourselves and the world and offer opportunities to make changes and create new meanings. (Hamilton, 20), (Bowles, 1995) “Stories make sense of things that don’t make sense but only if they are told.” according to storyteller, Diane Rooks. (Rooks, 1)
What is the nature of story? What are the essential elements make that up story? I wondered if my search for story in the literature would help unlock its magic. My research reveals description of personal story in health care with a range of description. There is a general agreement that story has a temporal order; beginning, middle and ending with a unified plot containing character, dilemma and resolution of sorts. It is distinguished by its emotional tone and engagement with the listener. There is a strong sense of “and then what?” and “what happened next?” A story is unified, cohesive and coherent. Personal stories describe a past experience and specific to illness or crisis find meaning, make sense of an experience and give order to events. (Paley, 2005), (Sandelowski, 1994), (Bowles, 1995). In the literature review specific to health care, the term narrative is frequently used and often used interchangeably with story. How is this relevant to the definition and use of story?
There are distinctions between narrative and story that have been identified and warrant consideration. Paley and Eva (2005) analyze elements of narrative and distinguish between narrative defined as a sequence of events with causal connections and story defined as an “evolved narrative” characterized by emotional cadence and a sense of “how things feel” rather than “how things happen”. They argue that failure to distinguish between the two types of narrative leads to common misconceptions which include; narratives are reliable accounts of personal reports, narratives represent the “truth of personal experience” or “how it seems to me”, and narrative is a mode of explanation. They argue that a story of illness, for example, may be emotionally persuasive but doesn’t guarantee believability. Patient stories can be mistaken, insincere and “beside the point.” They warn against “romanticizing narrative” and reinforce the concept that narrative as sequence of events can be objectively measured true or false contrasted to narrative as story which evokes an emotional response which may actually detract or be mistaken for reality.
The truth of the story raises an issue that is inherent to story and its use. Although Paley and Eva’s point is clear; stories can’t always be measured against objective criteria, she is concerned with analysis rather than with interpretation. There is considerable agreement within health care that an illness story is constructed to provide meaning and understanding told from the narrator’s point of view. (Hamilton, 2006) The story is believed to be true based on the teller’s perception of the experience and relationship to it and others. Simply stated, the teller shares the truth of personal experience and its meaning. I’m reminded of an elderly woman who was hospitalized for the treatment of severe respiratory disease. She minced no words about her desire to get home and smoke. Upon further dialogue, she blurted out her fear of dying IF she quit cigarettes! It became clear that her understanding was based her perception of the relationship between the death of two close friends who had quit the habit and died shortly after this. Her story reflected the meaning she had constructed based on her experience, perception of events and relationships. The nature of story is based on the underlying proposition that the narrative or story is true.
This proposition of fictional truth is supported by the patient’s or teller’s own voice. Mind-body literature describes the language of story or narrative as biologically based and that the story provides insight into the teller’s perception of illness, relationship to self and others within a cultural context. (Griffith, 1994) We understand ourselves based on the language that is used. For example, in a study of people with chronic obstructive pulmonary disease being treated in a hospital setting, individual patients described experiences and expressed feelings that were not always congruent with objective data. For example, one man waiting for a nurse to answer his call felt “afraid that I would die,” which was expressed in spite of objective data that indicated no immediate danger. (Bailey, 2002). Although his perceived near death experience was not supported by objective data such as level of oxygenation and changes in vital signs, his story is true based on his perception and provides meaningful context for his illness as well as options for additional management.
The truth of story doesn’t mean the story remains static. Stories, in fact, may change with additional information and experience but remain true to the narrator’s experience. The establishment of narrative order on life distinguishes a self narrative as a representation of life at a specific time; “life as lived” which is what actually happened, “life as experienced” which consists of emotions, thoughts, meanings and “life as told” which is the telling. (Sandelowski, 1991) The inconsistency among narrative order is expected because the teller chooses the manner in which to characterize behavior at a specific time. A telling gives way to a retelling over time. Although the story may change, it remains true to the teller’s description of meaning at a specific time which must be accepted in order to effectively use story in patient care otherwise we risk imposing our own story or imposing the medical model story onto the patient and thus distorting the interpretation and losing opportunity for understanding, empathy and helpful intervention.
I wondered what the professional story tellers had to offer to the discussion of narrative and story. According to Sobol and Gentile (2004), the word narrative itself is derived from the Indo-European root gna, which means both to “know” and to “tell”. Although narrative in reference to story may be the name of choice for scholars, some story tellers are put off by the term saying that narrative reflects a self importance and over-intellectualization. He goes on to describe what story telling is not but does state that story telling is a “medium in its own right…an artistic process that works with memory, imagination, emotion, intellect, language …most crucially relationship in the living moment-person to person or person-group.” (p. 3). He goes on to write that story telling has had a basic role in development and maintaining people and cultures. Although he recognizes the interdisciplinary interest in story telling, he describes the ambivalence in the “push/pull” approach of the “story telling world” to these larger domains of influence such as our health care institutions.
GENERAL PERSPECTIVES ON STORY AND HEALING
The nature of story; its definition and structure help to demonstrate its use in health care. My interest and use of story parallels an increasing interest around the use of story in healthcare. (Bowles, 1995), (Sandelowski, 1994), (Tanner, 1999). Many healthcare professionals recognize story as therapeutic for patients as well as for caregivers. Clark (1995) explored the use of personal story and what it means to knowing, health and caring in nursing. She noted significance in the way people generate story in response to an experience related to health and illness. Further, her research supported her thesis that personal story facilitates knowing, health and caring in nursing. In addition, she comments about her story in nursing practice, “As I found meaning in the events of my nursing career, I realized some current demands warranted time and energy…made a renewed commitment.” (p. 91)
Story is woven within nursing practice; nurses use story to provide care, educate, help patients understand their meaning of illness and help foster healthier meanings. Although story has long been inherent within nursing, it has been recently rediscovered within the profession. Sandelowski (1994), a nurse educator, describes this rediscovery as response to perceived loss of patients to the “dehumanization of modern health care” and of the art of storytelling. (p. 24) Sandelowski effectively argues that story or personal narrative brings together scientific and humanistic principles as well as values to nursing practice which is unique to the profession. Stories of illness represents the meaning of the experience and provides an explanation that makes sense for the patient in the context of self and relationships. Our patient stories require careful listening in order to understand, interpret and utilize in order to facilitate care and healing.
I have been encouraged to learn about the interest in story and narrative from the medical community. There is, in fact, a medical program at Columbia University called Program in Narrative Medicine distinguished by the development of physician competencies focused on listening, interpreting and genuine engagement with the patient story. Narrative competence is defined as a set of skills “required to recognize, absorb, interpret, and be moved by the stories one hears or reads.” (Charon, 2004) This is a significant movement since according to Dr Jerry Vennatta, former dean of Oklahoma College of Medicine who was quoted in a New York Times article (October, 11, 2003) as saying “It is easy to lose sight of the fact that still, in the 21st century, it is believed that 80-85% of diagnosis is in the patient’s story.” This is remarkable in the context of our highly technological health care system and in patients’ expectations for immediate answers from often seems like an endless series of tests and diagnostic procedures.
The patient story not only provides meaning within the context of an illness, but provides insight into the complexities of the patient experience of illness. For example, Dr Charon(2004), a faculty member in the Narrative Medicine program describes a moving account about a visit with a new patient, a sixty five year old Dominican man with a complaint of back pain. She starts with a simple explanation and request for him to tell whatever he thinks is needed to know about his health. He tells his story and sobs, “No one has ever let me do this before.” (p. 862). She listens without interruption and learns about his back pain and the connections among his many other problems including illiteracy, familial losses, unemployment and his life in an unfamiliar culture. This knowledge and understanding facilitated an appropriate plan to address multiple issues that were recognized in the telling. She argues that not only patient care is enhanced but physicians benefit from increased understanding of their own experience.
In addition to stories told by patients, nurses and physicians, there are elder story circles established in the community like in assisted living facilities or elder community sites. Paula Crimmens( 1998) conducts and writes about this kind of story telling noting that the importance of working with older people” has been has been undervalued and marginalized as elderly people themselves.” (p. 9) However, she observes that as our aging population increases there is a movement aimed at eliminating the stereotype of older people as being “burdensome and a drain on resources” (p. 9) with a reconstruction of the meaning to be an older person in our culture as a resource for wisdom calling for care with respect and dignity. The stories in some groups are folk and fairy tales which not only entertain but affirm life stages and thus articulate meaning for the listeners. For example, Crimmens uses tales from different cultures that may appear different but explore universal themes relative to older people such as stories that contain a central elderly figure (Granny Evergreen), loss of lives (Crescent Moon Bear) loss of home(How the Villagers found Wisdom) and marriage representing the search for balance between masculine and feminine archetypes that work toward wholeness.
Similar stories were told in a pilot study designed to examine the use of story as a therapeutic intervention for dementia patients in a long term care setting. The study (Holm, 1995) demonstrated that story telling helped patients to participate in associative conversation, increased memory of prior life experiences and increased interaction with others and improved connection among group participants. The group met for weekly for two months and the story selection was based on the following criteria; incorporate at least two of Erickson’s eight developmental stages, for example stage eight is characterized by the conflict of integrity vs despair to develop wisdom in late adulthood and universal themes such as “returning home.” Although the specific story titles were not included in the narrative, story selection in this study reflects Crimmins’ work with traditional tales. The authors describe the language of story as “metaphorical and rich in symbols”(p. 262) which have ability to reach a “deeper level within us” to understand meaning of life. (p. 262) Although there were only six participants in the study, the results support the benefits of story as a therapeutic intervention and approach that have implications for practice. The study concludes that storytelling impacted the quality of life for participants by enhancing well being.
The use of traditional stories in long term care facilities helps to validate that fairy tales are not just for children. Alan Chinin (1989) defines “fairy tale” as a specific kind of story characterized by ordinary people in extraordinary situations struggling with basic human dilemma. “When wishing still worked” is a beginning phrase to inform that the tale is fantasy which is actually the strength of a fairy tale. Imagination helps to disconnect the restraints of reality and social convention. In so doing, it fosters hope of possibility. Of over 4,000 fairy tales, only 2% are elder tales. Elder tales are characterized by stories that symbolize the developmental tasks necessary for completion in an older person’s life. For example, healthy image of maturity, self knowledge, wisdom are tasks taken on by an older protagonist. Chinin(1989) notes that elder tales not only entertain children but advise the elder grandparent in the telling. Dieckman (1979) discusses the symbolic language of fairy tales noting the traditional images represent meaning that help problem solve, foster development of intellect and facilitate healing even without conscious interpretation. The fairy tale imagery “speaks beneath the knowing consciousness.” (P. 28)
In another storytelling effort, research conducted at long term care facility in Texas helped to establish a narrative approach to care using personal story telling. Heliker (1999) examines functions of personal story in the context of long term care. The functions are; contextual grounding or locating self which takes into account personal beliefs and values, bonding or enhancing relationships, validation and affirmation refers to self examination and acceptance of the teller’s story or “perceived reality” which acknowledges the presence and integrity of each elder and is particularly significant for residents of long term care facilities who often suffer the negative effects of institutional living. Additional functions are catharsis or a safe place to express feelings, an opportunity to challenge stereotypes of aging in our culture and finally teaching or specifically models for problem solving. Heliker goes on to describe a newly admitted resident, an eighty four year old woman who responds to the question, “Tell me about your life.” Her story provides an interpretation for meaning with the identification of certain emerging themes such as value of work, productivity and competitiveness. She and the staff transformed themes into an individualized care plan that included specific activities and contribution to patient care conferences. This approach to practice not only improves the quality of care but enhances “authentic care and the very essence of ethics-based care.” (p. 523)
A similar use of story takes place in community settings including long term care. These story groups often referred to as reminiscent groups are characterized by older people telling their life story. An interesting study conducted in New York explored the connection between telling life histories and the psychological adjustment older people make. (Sherman, 1994) The study was not only interested in life story but the manner in which it was told or how it was expressed such as highly animated, reflective or matter of fact. The research utilized specific tools to measure adjustment as well as the manner in which a story was told. The study identified a positive relationship between telling about life as experienced and healthy adjustment based on Erikson’s integrity vs despair conflict. Likewise, in a study taken up by anthropologist Myerhoff (1978) nearly thirty years, the members of Jewish Senior Center group in Venice, California tell their life stories. It’s a moving narrative; members’ stories are beautifully woven into a fabric of daily community life to describe the meaning of their lives, survival and the integrity of their culture. It is clear that the telling helped with adjustment to changes associated with simply getting older. In addition, as the author listened to their stories, she began to reconsider the meaning of her own life.
Story is a complex phenomenon and process, engaging, entertaining, meaning making, tugging at heart and minds but still how does it actually work? The connection between mind and body has been well established in recent years. Gilbert (2003) describes an unraveling of this connection as modern medicine triumphs over death and disease with increasing technology, intervention and pharmaceutical treatment. He suggests reasons for this and includes; focus on compartmentalization and control, cultural belief that control of nature not only possible but our right, loss of the principles of community care and lack of awareness of self healing. Research conducted in the past thirty years offers evidence that supports the mind body connection. For example, a fascinating experiment designed to demonstrate classic conditioning of the immune system of mice paired a noxious immunosuppressant drug with a sugar solution. Time passed and when the immunosuppressant drug was taken away, the sugar solution alone produced the same results. The emerging possibility was that belief systems directly affected biology. (Gilbert, 2003)
The connection between mind and body is clearly evident in the use of language in working with mind-body problems such as headaches, seizures and conversion paralysis that are termed somatic disorders. Griffith (1994 ) makes a compelling case for the relationship between language and body representing a union of philosophy and science, story and biology. In 1971, the philosopher Heidegger studied existence, the question of “being” and described it as one that understands or has knowledge of self and world and one that is understood or has meaning of pre language. He based this concept on language and believed that people do not create language rather they are created by language. Furthermore, he believed language could not be understood if separated from the act of speaking. Heidegger’s student, Merleau-Ponty went on to study gestalt psychology and was drawn to new findings that demonstrated sensory gestalts represented the site of union between body and mind. He continued to investigate perceptions described outside of our body’s control but organized in form by our mind, for example, we perceive groups or forms rather than their individual elements. He went on to describe the fundamental unit of human organization as a story rather than isolated.
Narrative therapy uses story in practice. At a recent workshop, Introduction to Narrative Therapy conducted at the Family Institute of Cambridge on December 3, 2006, presenter Christopher Behan began by saying “every utterance is a story” which sharply contrasts with earlier definitions in this paper. The assumptions for this model are based on the following; we are made up of stories, a problem saturated story is often the dominant story, neglected stories or experience are not storied but may constitute an alternative story preferred by an individual. The model is based on a philosophy called social constructivism that says all knowledge comes from social interaction, invention or artifact of a particular culture. This is radically different from the prevailing point of view known as structuralism which supports belief in an underlying structure or essence to any phenomenon. Structure can be taken apart and analyzed, for example, deviant behavior from a structuralist viewpoint is an external manifestation of an internal problem. Hair pulling might be reflective of lack of core soothing or poor mothering. Critics of structuralism identify problems that stem from this viewpoint; the rise of experts, truth claims, internalizing problems, like anxiety for example and increasing isolation.
Narrative therapy, on the other hand, recognizes the ability of people to help themselves and separates the problem from the person by externalizing or moving the problem outside of the person. This helps people to create distance from the problem, eliminate blame and think about it from another perspective. A person engaged in narrative therapy for the evaluation and treatment of depression would name the problem with help from the therapist. So, rather than “I am depressed” the problem might be named “blue clouds.” Naming the problem using the person’s language is the first category of inquiry on the statement of position map. The map guides questions that explore the effects of the problem, evaluation of effects and justification of evaluations. During this process, alternative stories are “thickened” which is an ongoing elaboration of the preferred alternative story. In addition, concepts such as commitment, purpose, hopes, dreams, values and beliefs are woven into the story. There are distinct questions such as “what effect does the “blue clouds” have on your life and relationship? What do your friends think about the “blue clouds?” Behan emphasized that people may hold both stories regarding a problem at the same time; the dominant problem story and the thickening alternative story. The resolution of problems and reconstruction of alternative story develops over time.
The reconstruction of story over time is explored by Diane Rooks (2001) specifically around grief work and the loss of children. She movingly tells the story of her son’s death, her grief and healing that slowly took place as she discovered and further studied the use of story in the process. Her research, extensive interviews, personal story and use of traditional tales helps her to identify major themes of healing with story; making connection, meaning from chaos, breaking barriers with imagery, preserving memory, transforming pain, fostering growth and learning. Although these themes have previously identified with the therapeutic use of story, the concept of hope calls attention. Rooks makes a convincing case for the wide ranging power of stories to provide hope in the midst of loss; sharing stories about loss, meaning, survival and resilience marking the way for healing or wholeness. Her journey leads from her despair over the sudden death of her son, efforts to make sense out of a lethal bee sting, sharing memories, constructing stories that became helpful to others and taking an active role in the establishment of the National Story for Healing Alliance associated with the National Storytelling Network.
“What ever else healing may be, it a negotiation of story, “says Dr Mehl-Madronna. (2005) (p 3) He not only listens to patient story, but he utilizes his Native-American stories to inspire people to change. He shares the belief described by Griffith that stories are what carry the “irreducible units” of meaning in our life. He also supports the connection of language and body: “we feel in our guts what we say.” (p. 5) Like Diane Rooks, he recognizes story as the means to hope. He sees illness as a creative solution to problems arising from imbalances and disharmony and that illness may represent one interpretation of attempt toward healing. He emphasizes relationships; biological, environmental, family and culture and defines healing as restoration of relationships. The unfolding story of illness provides clues to where the imbalance exists and what someone needs to hear. So, healing becomes a negotiation of story, an awareness, a shift, an advancement, telling and retelling and remaking, re-authoring story to create more balanced and harmonious relationships.
BRINGING STORY TO PRACTICE
What happens next? Bringing story to practice means recognition and appreciation of my patients’ stories as well as my colleagues’ stories. It offers a different perspective from which to gather data, identify problems and care plans. I can employ nonjudgmental listening skills with ongoing awareness of personal bias and beliefs. How many times have I nodded in agreement to a nurse’s conclusion that a patient’s frequent request for pain medication is based on history of substance abuse? I can listen to hear a patient’s story of illness that will provide meaning for the experience, an opportunity for understanding and empathy and improved coordination of care. For example, I recently met with a middle aged woman who was hospitalized for the evaluation and management of possible infection. She was undergoing several diagnostic tests and consultations. Her history included heroine use. During our interview, she said, “I know my body…something is not right.” I rethought my response based on my introduction to narrative therapy by saying, “What’s that like for you?” This seems simple enough but previously would not have been in my mental framework. This question led to another story illustrating the complexity of her experience. Her response helped me to facilitate an appropriate referral during her hospital stay.
There are appropriate times to tell stories to patients who are hospitalized. I am better equipped to call upon past patient stories and tell them to others who may be in similar plots. This is educative as well as supportive. For example, I met with an older man with respiratory problems whose physician requested transfer to a specialized rehabilitation setting. He was anxious, didn’t understand the need or benefit for further care and was reluctant to agree to transfer. Remarkably, I remembered a similar situation that had occurred several days before and told him the story. I noticed changes in him; a gradual reduction in his worries, beginning insight into benefit and a genuine agreement to agree to the transfer the following day.
In addition to patient care, I can utilize story with my colleagues. Stories about patient experience as well as our own nursing experience can be used in staff meetings. Our meetings often focus on obstacles to hospital discharge and surely can be energized by story for problem solving. Our department has discussed establishment of a newsletter to educate the hospital community which would easily lend itself to case management stories. I can impact hospital climate by inviting patient and staff story with increasing mindfulness; self awareness, attitude and even posture, for example, bring a chair to the bedside so discussion is not hovering over the patient in bed!
Besides my daily practice, I imagine using story in several ways. First, I can continue to explore the use of traditional tales and consider a grant proposal based on a model of story telling for long term care facilities. Although I enjoy storytelling at a local nursing home, I am now aware of the significance that traditional tales hold for elders and the manner in which story can enhance quality of life issues. I can increase my repertoire of traditional tales to use. Another area of interest and step into practice with story is to investigate nursing and medical curriculum in order to determine whether or not story or narrative is part of today’s education for nursing and physicians. A compelling case can be made for the inclusion, use and practice. Lastly, I consider the use of radio in a similar manner of the popular show called “Car Talk” which is broadcast on National Public Radio. The objective of the show, “Care Talk” or “Health Connection”, is a facilitation of access to care. For example, as our population ages, the middle aged “boomers” are often caught between care of children and aging parents who are often living long distance away. Although many “boomers” have access to immediate information and resources, entry to health care for aging parents may be daunting. Calls into the show, for example, might highlight a concern such as early memory loss, behavior changes secondary to early dementia and home management difficulties. The answers are provided in storied form, sharing similar stories that I will collect from my experience that provide support, connection to the caller’s story, education and humor as appropriate. This is an opportunity to reach a different audience with a storied approach.
My exploration of story, its nature, uses in health care and contribution to healing helps to make sense of my current story with an increased understanding of self as person, self as nurse and possibilities for my future. My research and reflection has increased the depth of my understanding and appreciation of story. Stories offer helpful intervention in health care settings to those who are willing to tell and willing to listen. Stories offer hope that lead us to wellness and balance among our physical, mental, emotional and spiritual dimensions. Thinking in story rather than about story is a strategy that will inspire healing in me and others. I leave you with this, someone once told me that the naked truth was just too harsh, so it was dressed up and called story.
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