Geriatric Nursing
Volume 31, Issue 1 , Pages 58-62, January 2010

Storytelling

Article Outline

Storytelling can be therapeutic. For the person, it is both validating and valuing—as nothing else can do. There is a connection between old age and spirituality and a quest for transcendence—to express one's self as part of the human condition. This article seeks to describe the links among spirituality, nursing care, and patient/resident storytelling, and includes suggestions on how to help older adults tell their stories, even if they are cognitively challenged by memory and language loss. It describes a worldview as expressed in several of the new nursing theories as “humanness”: a life cycle of continuous growth leading, perhaps, to “self-transcendence.” Storytelling can be peacemaking and transformative. The voice of the “wounded storyteller” and how nurses can make that voice heard might be the takeaway message.

 

He taught me that everybody has a story to tell, and everyone wants someone to listen. He taught me that listening to patients' stories is part of nursing. And I taught him that being able to tell that story is part of the healing process.

—Teresa Campbell, RN1

In the last few decades of the 20th century, when the women's liberation movement was reshaping the worldview of women, it was suggested that perhaps the word history should have a modifier—herstory – just to make things equal. The word never quite took hold. History it is—our nursing assessment draws from it, and the patient care plan is based on it. But wait a minute. Step back. Our patients' (residents') history is not just a dry compendium of facts, surgeries, likes and dislikes, marriages and changes, comings-into-life and departings. It is a reality-based (like evidence-based) story of being, of choices made. It is a story about the human condition. And it is a story that can be therapeutic for older adults who own those facts and experiences and can use them to cope with and caress their days or years ahead. Storytelling is validating and valuing the person—as nothing else can do. Perhaps it explains, in part, why we became nurses: making someone's voice heard can, implicitly, help others.

There is a connection between old age and spirituality; a quest in “the mature years … for transcendence, which is part of all human beings at different degrees…. to express itself … as a part of human integrity.”2 This article seeks to describe the links among spirituality, nursing care, and patient/resident storytelling. So a little philosophy, a little nursing theory, a little science (rationality), and the meaning of “being there” with the person. The article includes some suggestions on how to help older adults tell their stories, even if they are cognitively challenged by memory and language loss.

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The Experience of Disease and Illness 

Perception of illness and disease (the “diagnosis”) is influenced by a person's culture, personality and coping mechanisms, economics, education, religion, previous life-threatening crises, aspects of the health care system itself,3 and so on—even before the disablements occasioned by the illness come forth and begin to change lifestyle. Expectations about “being old,” of aging, losses, or the prospect of a dementing illness, fall under the same influences. Perhaps the word perception is too hifalutin; perhaps we are talking about understanding—and existential dread.

The sociologist Talcott Parsons described “the sick person role” and sickness as a disturbance in normal human functioning—not unlike the notion of “disharmony” suggested by New Age nursing theorists (discussed later). The sick person role is one that, across all cultures, carries certain rights and obligations.4 The right to be sick means being exempt from one's normal social role(s) and duties; it is an exemption based on the severity of the illness. Being sick or ill has to be “legitimated” by a societally approved health care professional (e.g., physician, nurse practitioner, physician's assistant, shaman) and includes, as well, approved behaviors or actions associated with being sick. Interestingly, this approval also protects society against malingering behaviors. In sum, the patient might not be responsible for his or her condition but is obligated to seek and follow expert opinion and care. Obligations of the sick role imply the need to get well after a reasonable time. We are likely to recall—if not reminisce about—being sick, having surgery, and so on. It is part of our story. We are not always sure, however, if someone wants to listen. People are there to help us get better, to be cured, but is someone there for our story?

The fact that people will differ with regard to the meaning and importance of their symptoms, illness, and the diagnosis itself will affect their “journey through a crisis.”5, 6 Dossey, a nursing theorist, wrote that illness and disease can be perceived as punishment, weakness, challenge, enemy, strategy, relief, value, or as permanent damage or loss.5, 6 The storytelling narrative can describe how and why a person made a health care decision—for themselves or for someone else—and whether and how they regret or value the decision they made. For a person at the end of life, this rapprochement—this storytelling—can be peacemaking and transformative.

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Spirituality and Nursing Theory 

Virtually all nursing theories embrace a humanistic value system but not necessarily a spiritual value system.6 In the early 1980s, the North American Nursing Diagnosis Association (NANDA) listed “spiritual distress” among its diagnoses and defined it as “a disruption in the life principle which pervades a person's entire being and which integrates and transcends biopsychosocial nature.”6, 7 Several years later, a NANDA conference listed three spiritual diagnoses: “spiritual concerns, spiritual distress, spiritual despair.6, 8

Although not abandoning nursing's scientific, rational, empiric, objective, and evidence-based care, the nursing care models that developed in the 1990s spoke to caring for the “spirit” as well as the body and the mind. The New Age paradigm incorporates a sense of spirituality into patient care.6 It goes beyond the construct of the patient–person as a biopsychosocial being to one with an “expanded consciousness,”6 “journeying to wholeness.”6 Among New Age nursing theories, “the mind” is not the same as the brain, spirit, or the soul but, rather, appreciated as an instrument capable of healing through its own processes including biofeedback, hypnotism, and imagery.6 This worldview is expressed in several of the new nursing theories as “humanness”: a life cycle of continuous growth leading, perhaps, to “self-transcendence”—climbing or going beyond. “Whether a major paradigm shift or minority opinion, the new perspective attempts to flesh out the scientific interpretation with a larger perspective, one with room for experiences and phenomenon long denied under the rationalistic rules.”6

Given this new worldview or paradigm, the meaning of being sick—of illness—changes and, as such, influences nursing (and patient) goals and practice. Illness and disease, for the nursing theorist Newman, is a positive, therapeutic message—a “shock”—to rethink and replan the strategy and pathway to “harmony” (i.e., health).6, 9 Watson, on the other hand (as per Barnum) holds that the presence of disease means that something is awry, “disharmonious,” wrong in the individual's development or spiritual life.6, 10 Nursing plans and practice consist of the nurse and patient working together to purge or become free of the disharmony—that is, the disease.

Spirituality in nursing is deeply embedded in holism and holistic nursing. A person is a biopsychosocial-spiritual entity, always developing, emerging, and moving toward transcendent wholeness. It is most emphatically not the espousal of a particular religion or religious credo. Holistic nursing practice is “doing” and “being.” Doing is traditional, technological, evidence-based nursing practice. Being means presence, “being with”; it partakes of intention, a state of consciousness with the patient, and can include prayer and meditation. For some New Age nurses, caring is the essence of nursing because it is the means, the vehicle, of nursing. Caring is more than a pretty notion; it is a mental and spiritual energy that focuses on the individual in a way that no other person can do; it is guided by science. So why did we become nurses? I think because we wanted to help someone's voice be heard. (See the “wounded storyteller” below.)

Different cultures, beliefs, and worldviews influence behavior and how spirituality is expressed. Incorporating spirituality in nursing practice—an appreciation of a person's striving toward harmony (if not transcendence)—is not unethical as long as the nurse knows and respects the person's interest and striving for wholeness (and achievement) at the end of life. However, we need to proceed with caution about assumptions and assessments about a person's worldview, religiosity, and spirituality.

Among virtually all nursing diagnosis typologies, spirituality is a part of the content.6 New Age nursing theorists and practitioners hold—without question—that humanity is a spiritual characteristic without which the biopsychosocial construct would be incomplete. The methods and strategies of spiritual therapeutics can emanate from traditional religion or the New Age nursing care paradigm of caring, wholeness, and spiritual relief.6 Regardless of the source of spirituality, the goals are the same: manage or reduce the stress associated with being ill, cure the illness or reduce its effect, reduce fear of death, or “achieve in the patient a state of transcendence in which the outcome of the disease process is less important and, indeed, is surmounted by a spiritual recovery/enhancement.”6 Storytelling can be both method and legacy.

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Storytelling 

Older adults are the “keepers of the culture” and transmit cultural history in various ways. The human brain is hardwired for storytelling. The hippocampus is where events go for processing, encoding, and distribution to other areas of the brain for permanent storage—and retrieval. Telling our story is “a natural psychological process when we are trying to make some type of shape to our lives, to bring about some type of peaceful acceptance of our past.”11 Is there hard scientific data to support the view that telling one's story contributes to health and wholeness? No. Yet many personal historians report that their clients just seem to come alive when they tell their story; “they grow more confident, too, as they talk about their lives.”11 Older adults who tell their stories keep their memories and values alive; it can reunite a family. Sometimes couched in terms of creativity, storytelling is sharing and transmitting something that is likely new, not known (or seen) before, and valued.

Gene Cohen, physician and director of the Center on Aging, Health and Humanities at George Washington University and author of The Mature Mind, holds that although brain decay is associated primarily with dementia and Parkinson's disease, the rule for the mind is the same as the rule for the body: use it or lose it. The brain's plasticity is seen in neurobiological research that shows that acetylcholine, the neurotransmitter most associated with memory and intellectual processes, continues to be produced independent of age; it is produced well into old age. Research describes growth in the density and length of dendrites in different parts of the brain, including the cerebral cortex—among 50–70 year olds. As per Cohen, five activities sustain and enhance mental clarity and agility: mental exercise, physical exercise, challenging leisure activities, achieving mastery over something that is valued, and strong social networking.12 This can happen in assisted-living communities.

Suggesting a different kind of old-age reckoning, typified by the tasks necessary to resolve Erik Erikson's integrity versus despair and disgust in the mature stage of life, Cohen posits an alternate developmental schema. It consists of four stages of “creative energy”: midlife reevaluation, liberation, summing up, and encore13:

•Midlife reevaluation: generally occurring in the mid-40s to mid-50s, adults begin to think about their work and their personal lives in terms of where they are and where they are headed. Realizing their mortality, adults want to create meaning in their lives. Characterized as “midlife crisis,” Cohen prefers to call this phenomenon a “quest energy to re-evaluate their lives.”13

•Liberation: occurring from the mid-50s to the mid-70s, this phase is associated with a sense of freedom (for many older adults) from the need to earn a living. It is a time of experimentation, of having the time to try something new. The mantra is, “If not now, when?”13

•Summing Up: from the late 60s through the 80s, there is a sense of needing and wanting to find meaning in the life lived. This is where wisdom can be shared through storytelling that could include unfinished business and unrealized aspirations.

•Encore: occurring in the 80s and older, this is an opportune time to make or restate one's values, one's life theme. It is a time of affirmation and celebration and place-marking among family and community and “in the spiritual realm.”13

We need to find ways to support our residents in telling their stories.

The Ill Person and Storytelling 

If we accept the proposition that all of us have a story to tell, then one who has an illness (chronic or acute) can be described as a “wounded storyteller.”14 It can be argued that this person is ethically obligated to tell his or her story so that those who have been robbed of their voice because of illness can be heard; this person is their voice. Fated to be ill, the wounded storyteller is trying to survive—and trying to help others survive. Yet rather than construing survival as the key mission of wounded storytellers, their moral imperative is in being a “witness” to the truth of illness. The story is not that of surviving the illness but of bearing witness to the effect of illness on the soul, on humanness. I think that nurses should be (are?) the natural companions of the wounded storytellers.

There are three types of wounded storyteller narratives.14 The first, the restitution narrative, has a passive voice. The wounded wait for their medication and accept the fact that their physicians are the only ones who can provide a happy ending. The restitution narrative asserts that illness is transitory; mortality can be held off. The second narrative type, chaos, is the dwindling voice of someone drowning in illness and suffering. There is no possibility of bartering: if I do X, then you will do Y. The third narrative, quest, speaks with a proactive voice and “demands a listener who is prepared to hear it as testimony.”14 Similar to Newman's notion that illness is an opportunity to engage, to do battle, the quest narrative speaks to a journey for which the goal may be unknown but there is something to be gained by the journeying itself. Cohen's theory of “quest energy” may be likened to this narrative style, as well.

I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else…. My body … was my calamity. My body … was my physical and metaphysical dignity.

—(Jean Amery)14

Dementia and Storytelling 

Old age is simultaneously celebrated for the enlightened insight that can be gleaned from older adults and trashed or devalued.2 People with dementia have stories to tell; they do not have to be denied this contribution. It is suggested that persons with dementia experience the “stages” of death and dying described by Kubler Ross: denial, anger, depression, bargaining, and the search for meaning that enables acceptance of the end of life.2 Reminiscence and (re-)creation of the life story should occur before communication and expression is lost. At the end of life, when dementia is taking its final toll, a connection might still be made by drawing on something unique in that person's history. Bell and Troxel15 recommended that personal care assistants carry a 5 by 8 card for each of their residents listing the important, individualized, idiosyncratic “stuff” of that person: nickname, special likes or dislikes, special song, special funny word, and so on. In this way, something that can make a difference in the person's life takes on a fundamental spirituality and becomes transcendental for the person.

Eliciting the Story 

Residents' stories—the facts of their lives—are both historical and a human truth. Questions to stimulate the storytelling narrative can draw on biography, geography, occupation, culture/tradition, wartime, adventure, relationships, and so on. One can ask questions about nicknames, courtship, games played as a child, important events and movements in which they were engaged (e.g., World War II, Korean War, Vietnam War; the women's movement; the civil rights movement; protesting global warming; etc.), favorite movie, music, and so on.16

Another framework to initiate storytelling draws on “generational memories”; life stages are associated with specific memories.15 Starting with childhood memories might be productive in that persons with dementia recall this stage of life better than more recent years and events. Questions or probes associated with each stage, suggested by the “Best Friends” approach to learning about older adults with dementia, include the following15:

•Childhood: urban or rural birthplace, pets, one-room school, favorite activities; any awards; town known for anything special?

•Adolescence: favorite class, first to get a high school diploma?, interests, special friends, hobbies and sports, how they got to school (car, walked, biked)

•Young adult: first car, first kiss, work, military, college, marriage, clubs and community

•Middle age: work and family, grandchildren, travel, hobbies, community

•Later years: achievements, family, travel, hobbies, leisure pursuits, community, losses

•Other questions to stimulate recall and storytelling: first airplane ride? How did you spend New Year's Eve? July 4th? Do you prefer the seashore or the mountains or the plains? Couch the query—the stimulus—in what you know about the resident and in your own grounding as well. For example: “Did I tell you that I was born in the Bronx? In New York City? They called my area of the east Bronx, in the 1960s, Fort Apache. Where were you born? Did it have a special name?”

Describe for the residents' families/significant others and your staff how you obtain the “nursing history” and how you “collect the data.” Hearing this, they can formulate their own questions and can participate in eliciting the story. They can “be there.” May they not know the anguish, upon looking at a sepia photograph, of not recognizing a single person, a single soul.

Longing to connect with one another … [….] We'd nod in agreement patient and slowly we'd search for the song that held us in gentle synchrony.

—P. Mitchell, RN17

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References 

  1. Campbell T. Excerpted from 'The Radio.'. In:  Davis C,  Schaeffer J editor. Intensive care. More poetry and prose by nurses. Iowa City: University of Iowa Press; 2003;p. 48
  2. Lawrence RM. Aspects of spirituality in dementia care. Dementia. 2003;2:393–402
  3. Mechanic D. Sociological dimensions of illness behaviors. Soc Sci Med. 1995;41:1202–1206
  4. Cockerham WC. The sick role. In: Medical sociology. 8th ed.. New York: Prentice-Hall; 2000;p. 156–178
  5. Dossey BM, Keegan L, Guzzetta CE, et al. Holistic nursing: a handbook for practice. Gaithersburg, MD: Aspen; 1995;Cited by: Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996
  6. Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996. p. 3,5,6,9,35,127,147.
  7. Gordon M. Manual of nursing diagnosis. New York: McGraw-Hill; 1982;p. 226. Cited by: Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996
  8. In:  Kim MJ,  McFarlan GK,  McLane AM editor. Pocket guide to nursing diagnosis. New York: McGraw-Hill; 1984;Cited by: Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996
  9. Newman MA. Health as expanding consciousness. 2nd ed.. New York: National League for Nursing Press; 1994;Cited by: Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996
  10. Watson J. Nursing: Human science and human care: a theory of nursing. New York: National League for Nursing Press; 1998;Cited by: Barnum BS. Spirituality in nursing: from traditional to new age. New York: Springer Publishing Company; 1996
  11. Third Age. Sharing life stories keep memories alive. Available at www.thirdage.com/print/1490965. Cited October 15, 2009.
  12. Cohen G. The mature mind. The positive power of the aging brain. New York: Basic Books; 2005;
  13. Cohen G. Creativity with aging: four phases of potential in the second half of life. Geriatrics. 2001;56:51–58
  14. Frank AW. The wounded storyteller. Body, illness and ethics. Chicago: University of Chicago Press; 1995;p. 137
  15. Bell V, Troxel D. A dignified life. The Best Friends approach to Alzheimer's care. A guide for family caregivers. Deerfield. Beach, FL: Health Communications; 2002;
  16. The Smithsonian folklife and oral history interviewing guide. Available at Washington, DC: Center for Folklife and Cultural Heritage; 2003;Available at www.folklife.si.eduCited October 15, 2009
  17. Mitchell P. Excerpted from "A Nurse's Farewell." Part 2. Connection. In:  Davis C,  Schaeffer J editor. Intensive care. More poetry and prose by nurses. Iowa City: University of Iowa Press; 2003;p. 149

ETHEL MITTY, EdD, RN, is an Adjunct Clinical Professor of Nursing at the College of Nursing, New York University, and Consultant in Long Term Care at the Hartford Institute for Geriatric Nursing, College of Nursing, New York University.

PII: S0197-4572(09)00497-2

doi:10.1016/j.gerinurse.2009.11.005

Geriatric Nursing
Volume 31, Issue 1 , Pages 58-62, January 2010

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