That the lived experience of patients has not been included in health care planning and delivery, and that this exclusion can negatively impact patients’ health and well-being is established in existing literature about patient engagement. When patients receive support to reflect on and share their health care experiences with their care providers, however, mutual learning and a strengthened care relationship can result. The author uses autoethnographic research to tell and analyze her own patient story and to examine how the model of transformation through writing can help patients move from a “first” (disempowered, suffering) story to a “second” story of empowerment and new perspective.1 The author explores to what extent expressive and reflective writing may play a role in helping patients to “re-narrate” what has happened to them within the health care context, and to spark dialogue with health care leaders that may result in improved care for others.
Personal Reflexive Statement / Impetus for the Research Project
On December 27, 2011, I received an incorrect diagnosis of appendicitis at my local Emergency department, had my appendix unnecessarily removed, and, in the days that followed, became gravely ill from the undiagnosed Clostridium difficile infection that was the actual cause of my symptoms. I was forty years old at the time. My husband and I had a three-year-old son and a daughter who turned two on January 15, 2012, one day after I finally came home from my nineteen-day hospital stay. For my family, the emotional impact of this experience still resonates. For example, our daughter’s first full sentence was, “Where’d Mommy go?”
After I recovered, I contacted my health authority to complain. A leader at the health authority subsequently invited me to write out my patient story and to share it, in person, with 450 care providers and senior managers, including members of my hospital’s health care leadership team. This meaningful experience led me to accept a two-year volunteer position as a member of the health authority’s Patient Advisory Committee. Afterward, I successfully applied for work with the health authority’s communications team, and three years later, I moved into a job with the organization’s patient experience team. My current job—Consultant, Patient Experience—is to support and encourage our health authority to include patients, and the lived experience of patients, in its decision making at all levels. This research article investigates the potential for patients to empower themselves through reflective writing, and to drive positive change in the health care system through sharing their stories with others.
My body is fighting. Fighting for my life, for my family. I want to go home, to sit on the couch with my husband and hold our babies in my lap. I want to feel their trusting skin, smell their slightly sweaty hair with baby shampoo undertones. Do they understand why I am here? Will they forgive me for being away so long? Our connection goes beyond love to the same knowing I had last week, when I think I could have died. The flip side. They are what kept me here when I could have dropped into the endless spiral.2
Existing literature about patient engagement has established that the lived experience of patients has not been included in health care planning and delivery and that this can affect patients’ health and well-being negatively.3 Sakalys points out that the relationship between patients and health providers is intrinsically and necessarily unequal, but that this inequality can result in patients’ lived experience being deemed as unimportant or not useful.4 Patient experiences, told in narrative form, however, can be vital for good individual patient care and for the improvement of health care policy.5 The ability to identify and reflect on one’s lived experience and self-knowledge is, of course, not a given but can be cultivated in part through expressive and reflective writing.6
Jana Archer and colleagues explain that while “the health care system has traditionally been disease, system, and provider focused rather than patient centred,” shared decision making is the foundation for patient-centered, informed, and ethical care.7 Part of inviting patients into the decision-making process is taking the time to learn about their experiences. Patients often know their own goals and needs best, and they have a unique perspective on what works well for them within the health care system even if they do not always have the means or opportunity to explore or express their needs and goals. Not only can their lived experiences expressed in the form of narrative benefit patients themselves,8 but they can also reveal places where health care is in need of improvement.9
In the context of my research, lived experience is defined as one’s own self-knowledge and experience, also described as “the voice of the lifeworld”—it includes both factual happenings and the meaning made from these in a process of reflection.10 The ability to identify and reflect on this self-knowledge is, of course, not a given but can be cultivated in part through expressive and reflective writing.11 When patients are able to share their lived experience with health care professionals (through story), opportunities for those professionals to listen for understanding, to identify gaps, and to inform system improvements can be enhanced.12 Opportunities also arise to identify and contest the power that exerts pressure on patients within the traditional structure of the medical system.13 Through this dialogue, the student becomes the teacher, and the teacher the student, creating a partnership of “teacher-student with student-teachers” that is beneficial to both parties and to society.14
The main purpose of this article is to show, through my own autoethnographic research, how patients may explore their lived experiences as narratives of healing and possibility in a way that may enhance understanding of patient engagement and its role in transforming how health care leaders approach health care planning and delivery. In sum, the potential benefits of encouraging patients to tell and write their stories are twofold: when patients write about their health care experiences, they are able to make sense of their (sometimes traumatic) experiences and to move forward in a new and empowered way. Second, when patients share their thoughts, their feelings and their experiences, they can inform improvements to benefit future patients and strengthen the health care system overall.15
Speaking Truth to (Clinical) Power
The literature summarized in the following review integrates insights from the applied fields of narrative/therapeutic writing, patient experience, and leadership and explores some of the tensions and the opportunities that exist in the context of patients expressing their lived experience through expressive and reflective writing, and perhaps even “re-narrating” what has happened to them within the health care context.
Patient narratives are important because they highlight lived experience and in doing so can challenge the balance of power within the health care system. Rita Charon, physician and author of Narrative Medicine, explains that “clinical medicine is only beginning to tailor therapeutic approaches to disease to the particular patient” and that the recent growth in patient-centered care—a movement that emphasizes the patient’s perspectives and desires throughout the health care journey—is a response to the narrowness of the clinical concept of care. Part of providing patient-centered care is learning to privilege patients’ lived experience alongside medical professionals’ clinical experience.16 Charon shares that “health care professionals may be knowledgeable about disease but are often ignorant of the abyss at which patients routinely stand. They have no idea, most of the time, of the depth and the hold of the fear and the rage that illness brings.”17 Patients, on the other hand, know this fear and rage well and are able to (or can be encouraged to) meaningfully and constructively tap into it when writing about their experiences.
Sharing one’s health care experiences can be an emotional and often painful process. When patients write about their fear and rage, the process can help them cope with traumatic experiences, especially when it is done in a safe environment with encouragement from those who have knowledge of the process. Writers are encouraged, with empathy, to seek out the places where it hurts, and getting close to feelings is a necessary part of re-narrating.18 Expressive writing researcher James Pennebaker confirms that people may feel sad and/or down after writing about trauma, but that their immune system improves from the practice, their physical symptoms (e.g., asthma attacks, chronic pain) lessen, and they report feeling better. He explains that his early research on writing and healing showed that people felt terrible immediately after writing about traumatic experiences, but better in the long run.19 He explains the potential dangers of writing, which are worth noting here: for the patient-as-writer, remaining in a “stuck” place of sadness and/or over-analysis has the potential to lead to self-absorption.20 This self-absorption can render the patient narrative less valuable—both personally and universally—and can even cause the storyteller to lose credibility.21 In telling their stories, patients—and those helping to facilitate the writing they might do—must therefore consider self-absorption versus self-reflection, and examine how these two states of being and approaches to “re-storying” can affect the power and/or usefulness of a patient narrative. Of course, sad or negative patient stories have a place within the writing-as-healing process if they are made meaningful (e.g., become more structured as they evolve, include positive emotion words).22 Provided the individual does not remain “stuck,” the exploration and “re-narration” of a sad or negative story can be a fulfilling and empowering experience.23
Patient narratives can open the door to a shared learning journey with far-reaching benefits, and connections forged in health care settings can potentially open dialogue between patients and health care providers. In this way, an initially “negative” health care experience can fuel a positive patient narrative that can result in positive change within the health care system, as it did in my case. Patient narratives, especially if they contain both expressive elements (i.e., facts and emotionally salient responses to happenings) and reflective elements (i.e., demonstrate an ability to structure and assess one’s experience in a more objective way), can potentially create connection and lead to shared awareness that can position patients closer to the center of health care decision making.24 When patients share their lived experience with health care professionals and health care professionals take these into account, these stories provide an opportunity to increase staff and physician awareness of patient and professional positioning within medical-institutional discourses.25 The resulting patient narratives can restore the person subtracted, ignored, or cancelled out of the contemporary medical model, thus empowering patients with voice and agency.26
The process of capturing patient experience narratives can build on the agency described above to spark a transformative journey. Again, Pennebaker indicates that writing out one’s feelings of fear and rage can be therapeutic. He contends that when people write about major upheavals, including both the facts and the emotions surrounding these happenings, they begin to organize and understand them.27 To reap the benefits of expressive writing, the key is to first get the traumatic story “out,” recognizing that “the self of pathographical writing is the self-in-crisis.”28 Once the story is out, the next step is to move beyond the trauma to a place of strength and empowerment (which can include a shift in perspective, meaning found, acceptance).29 Hunsaker Hawkins shows that “the very existence of pathography demonstrates that healing the self often involves the act of reaching out to heal others” and that writing pathographies can help drive a patient toward recovery.30
Lengelle and Meijers’s model of transformation through writing describes the process that those writing a story in response to a difficult situation may go through. By moving through the cycle described in this model—along with structured writing exercises of various kinds—patients can be equipped and may move more readily from a “first” (disempowered, suffering story) to a “second” story (empowerment and new perspective). The model helps its writers move from an initial boundary experience through four-cognitive learning stages—sensing, sifting, focusing, and understanding—to a place of empowerment.31 Lengelle describes the model of transformation through writing as “an ever-widening spiral (seashell-like) moving upward—symbolizing expanded awareness whilst also providing writers with a chance to reflect on stages gone by.”32
An integral part of this model (see figure 1) is the need for dialogue with others to move the process forward and to use writing to observe one’s thoughts. Writing this way is not about dumping, complaining, or merely getting it out but involves respect for emotions experienced as well as a willingness to reflect on both happenings and feelings.33 Moving through this reflective process can help patients use expressive and reflective writing to rewrite and develop their patient narratives, to “re-story” and to heal from their experiences.
In addition to its value to patients within the writing-as-healing process, the model of transformation through writing also reflects the current journey of the health care system. As health care leaders strive to listen to the voices of patients, to learn from patients’ experiences, and to include patients and their narratives in planning and decision making, they too are reflecting in a way that calls for a new professional identity narrative. They may for instance ask, “What can we learn from what went wrong here and from the hurt the patient experienced? How can we participate in a collaborative dialogue with patients to facilitate change?” They may track or mark their progress in this area by noting the “stages gone by” and expanding their stories of what matters to their patients. Ideally, perhaps the “ever-widening spiral” Lengelle describes will apply and the health care system will evolve from a “first story” of disease, system, and provider-focused care to a “second story” of patient-centered care.34
Autoethnography as Method
Autoethnography is a research approach that endeavors to describe and analyze personal experience as a means of understanding cultural experience. This approach empowers researchers to analyze and tell about their own epiphanies as part of a culture and/or cultural identity.35 I have chosen to use autoethnography as my research method because this qualitative form of research invites me to include subjectivity and emotionality in my exploration of the ethical and social issues linked to my personal experience.36 Exploring this research question through autoethnography combines personal experience with the rigour of academic reflection with an aim to health care improvement, both on a personal and policy level.37
Many scholars turn to autoethnography to produce “research that would sensitize researchers to issues of identity politics, to experiences shrouded in silence, and to forms of representation that deepen our capacity to empathize with people who are different from us.”38 Conducting health-related research through autoethnography questions the status quo, resists assumptions, and reminds medical and administrative health care leaders that clinicians may be experts in their professional roles but patients are experts when it comes to their own health and care and can become more articulate and empowered experts by engaging in their own narrative reflections. Autoethnography may therefore serve as a valuable method to show why and how the health care system could benefit from a shift from a system-centered model to a patient-centered model.
Within this autoethnography, I will make use of Lengelle and Meijers’s model of transformation through writing to conceptualize the personal development I myself engaged in by writing from a disempowered “first” story to an empowered “second” story. I will also explore to what extent patient narratives may create a “second story” that can potentially empower patients to better articulate their needs, and to use negative experiences to inspire positive change in health care planning and delivery. To achieve this aim, I will draw on my patient narrative and on journal entries and correspondence written while I was reflecting on my illness and recovery, and on the reflective journal I kept throughout my research process. I will portray how I moved from discussion of my own boundary experience (which can be a situation, event, or nonuseful attitude) to my level-one awareness or “first story,” and through a process of transformational writing to arrive at my “second story” where I accepted things as they were, found meaning, and experienced a shift in perspective.39
Aims and Objectives
I have two main objectives for this project: (1) to map my own patient journey from “first story” to “second story,” and to examine my participation in a broadening movement in the health care system to privilege patient voices and to move from “first story” to “second story” at the individual level and at the system level. Exploring this “dual evolution” through my own patient narrative will underline the benefits and effectiveness of writing as healing, and of writing-the-self as healing process;40 and (2) to enhance understanding of patient engagement and its role in transforming the way health care leaders approach health care planning and delivery, and to contextualize the autoethnographic story by determining ways patients may also present their lived experiences/stories as narratives of healing and possibility. Providing this context will demonstrate the project’s relevance within a broader social context.41
The Boundary Experience
Lengelle explains that the cycle of transformation through writing always begins with a boundary experience, such as “getting fired, getting cancer, getting cheated on.”42 The boundary experience mires the writer in a “first story” that is marked by “habitual patterns of thinking and lamenting.”43 My own boundary experience was neither my illness nor my nineteen-day hospital stay. Instead, it was the realization that the people I trusted to take care of me made errors because they didn’t listen to me.
I discovered the mistake that led to my misdiagnosis because I wanted a clear picture of my illness. I grew up with juvenile rheumatoid arthritis (now called juvenile idiopathic arthritis) and learned very early on how to be a partner in my care. Recovering from my C. difficile infection was a completely different experience. The morphine I received to ease my pain made me sleepy and confused, leaving me with memory gaps and a disconnected feeling. When I shared this frustration with one of my physicians, he suggested it could be helpful to request my medical records—and he said that the health authority would mail them to me free of charge.
I was grateful to learn I could get my records so easily. It made me feel as if I could write myself back into my own story. On my discharge day, January 14, 2012, the last thing my husband Michael and I did at the hospital was submit a request for my medical records. When they arrived by mail on February 21, I ripped open the thick brown envelope with excitement. Seconds later, though, I stood paralyzed with sadness and frustration. The error was on the very first page. The paramedics who took me to the hospital on December 27, 2011, did not record that I had diarrhea. No one did, even though I described this concern to multiple caregivers. Clinicians later told me that this one key symptom should have been enough to prompt a C. difficile test and lead directly to my diagnosis, especially when coupled with my history of chronic illness and the fact that I had recently been taking antibiotics. However, no one noted diarrhea in my medical records until December 30, when I returned to Emergency by ambulance seventy-five hours after my first visit to Emergency and more than two days after a surgeon had unnecessarily removed my appendix. I recorded my frustration about this missed clue in the initial version of my patient narrative:
As a patient I believed that everything I told my caregivers was being written down, but that was not the case. There is no mention in my medical records about the stool I described—in fact, the emergency physician who diagnosed me wrote “constipated” rather than describing the stool I told him about. He diagnosed me with appendicitis.44
A cold, guarded feeling washed over me as I stood frozen in place next to my daughter’s change table, staring at my medical records. I could have died. While I was in the hospital, I thought I might die. My records showed that if I had died, no one would ever have known that my care included a medical error. How could this have happened? I asked myself. How easily could it happen again? The jolt of finding the error left me feeling unprotected and abandoned. This realization marked the starting point of my cycle of transformation through writing.
Our community has only one hospital. This is the thought that kept running through my mind as I pondered my medical records. I wondered, “How will I ever go there again? How will I take my family there?” I could not imagine trusting anyone at our hospital with my family’s medical care.
In the multistage process of writing-to-heal, the sensing stage immediately follows the boundary experience. During the sensing stage, the writer gathers information and begins to explore and describe emotions, but still needs to develop a perspective and an explanation for what has happened.45 As Charon explains, the act of writing about our health care experiences is more than a reporting process—it is also a process of “exposing our own experience to ourselves for the first time.”46 Through this process of self-discovery through narrative, we are able to unearth deeper knowledge that “resides outside of awareness.”47 When I reflect on my own sensing stage, I remember feeling overwhelmed by how easily I could have died or suffered serious health consequences, and what that would have meant, not just for me but also for Michael, our children, and our extended family. Why didn’t the paramedics, doctors, and nurses I interacted with hear what I said? Why wasn’t I part of the picture while they were caring for me?
“I want to stand outside the Emergency entrance with a placard,” my husband exclaimed at the time. I understood what he meant. I wanted to voice my feelings, thoughts, and memories—a desire that Lengelle and Meijers identify as the focus of the sensing stage.48 All the same, I wasn’t convinced that Michael’s idea to protest outside the Emergency department would meet our needs. When I was a journalist in my twenties and early thirties, I wrote a few articles about patients’ negative experiences with the health system. The stories were poignant, but they only stayed in people’s memories as long as the news cycle. I wanted to make lasting change.
In 2012, I had never heard of the cycle of transformation through writing. I had never read anything by Pennebaker, Charon, Lengelle, or Meijers. Writing about my experience made sense to me, though, and I knew that I needed to get my story out. I started to take notes about my experience. In the writing group I belonged to at the time, I discussed creating a one-woman show about my illness and recovery. Then one day I received a multiple-choice discharge survey from my hospital, asking me about my patient experience. I filled in the dots and wrote detailed notes in the spaces between the questions. I spotted a note at the bottom of the survey instructing patients to contact the health authority’s Leader of Patient Experience if they wanted to discuss their hospital stay. I called her number and left her a message. When she returned my call, she listened to my story and apologized instantly. She asked me what she and the health authority could do to help me heal. Her response surprised me. I had expected barriers, not questions or apologies—I was criticizing my medical care, after all, and I was a patient, not a physician or an administrator backed by institutional power. I remember telling her that I wanted to tell my story to the health authority’s board of directors. She paused and said, “You can do that if you’d like to, and I can help you do that—but what about telling your story directly to people who work in the departments that cared for you, so they can learn from your experience?”
This idea—that I could have a conversation with the people who made the mistakes in my diagnosis—had not occurred to me. I saw myself as a tiny person knocking on an enormous door, unseen and unheard. Michael and I discussed what it would be like to meet with the people whose decision making had hurt our family. It made sense. We wanted to make sure no other family would have to go through what we went through. We agreed to meet with health care leaders in the hospital’s emergency, surgical services, and infection prevention and control departments.
Lengelle and Meijers explain that when a writer is in the “transformational space,” what they express should be “personally relevant, emotionally laden, and narrative-like in structure” in order for the process to be therapeutic.49 I knew that my first attempts at capturing my story might not be useful to others, but I needed to start by getting it out and following the narrative process where it led me. At this point, I shifted from the sensing stage of the writing-as-healing process into the sifting stage, a sorting process where one begins to make meaning out of experience. Lengelle and Meijers describe this stage as a place where the writer starts to develop analogies and, from those analogies, to unearth constructs and concepts. According to Lengelle and Meijers, poetry works particularly well for the sifting stage due to its limited word count and its reliance on image and metaphor. Poetry helps the writer produce an “antenarrative” reflecting a multivoiced or fragmented state that can help the writer work things out and continue to spiral through the stages of the model of transformation through writing.50 The poem that follows is a 2012 journal entry that speaks to this process well. I never showed this poem to anyone; it was just part of my writing-as-healing process. In retrospect, I can see how it helped me to express my emotions and get to a point where I could identify the parts of my patient journey I wanted to explore.
The sifting process helps the writer to create meaning, not only for the Self but also for the narrative once the time comes to release it into the wider world. The poem above speaks to the theme of communication breakdown, highlights the fear and discomfort that resulted from the lack of communication I experienced, and explains how my negative care experience affected our children. These things mattered the most to me—they were the things I wished I could change for myself and for my family, and the things I would want to help improve for others. I did not want to be seen as just another faceless person in a blue gown, taking up a bed in a busy hospital. I wanted the people who had cared for me to see themselves in me.
The Leader of Patient Experience arranged three meetings in March 2012. Michael and I met with medical leaders and managers from the hospital’s emergency department and its surgical services department, and the manager and medical director of the health authority–wide infection prevention and control department. I brought a one-page summary of my patient story to share. We braced ourselves for possible confrontation, but after I read my narrative aloud, the medical leaders responded with respect, compassion, empathy, and apology. The medical director of infection prevention and control told me that with the symptoms I had, I should have automatically had my stool tested the first time I came to Emergency. The medical director of the Emergency department said he felt grateful to us for sharing our story because his team could learn from our experience and other patients would benefit from that learning. He told us, “I bring my family to this Emergency department too.” The manager of surgical services told me “This is on us—we should have been more questioning.” Meanwhile, the manager of infection prevention and control, who had driven two hours north for our meeting, said that hearing our story had motivated her to move her office to our hospital “to provide the hospital with more support for infection control.”52 When I heard that, I felt hopeful. I sensed that Michael and I had started a productive dialogue that could make a difference for others. I believed we had found the right way to share my patient narrative—a mixture of fact and emotion that got the story out and freed me from my negative place.53
In August 2012, the Leader of Patient Experience asked if I would write a longer version of my patient narrative. She was hoping I would share it at a meeting of care providers—between four and five hundred of them—from across the health authority. I wondered if I wanted to. My story was not positive, after all. Would people really want to hear about my experience at an organization-wide meeting? She said they definitely would. I asked her if she or anyone else from the health authority would need to review or edit the story before the presentation. She told me no, and she emphasized, “This is your story.” When I told Michael, he thought it was a great opportunity—another chance to work toward positive change. I accepted the offer and began expanding the one-page summary narrative I had written in the spring. This process of revision marked the beginning of my focusing stage in the model of transformation through writing, where “the insights and fragments start to become a second story.”54 Part of this process is figuring out what the “big picture” of the story is, and then ordering the material effectively and beginning to draw conclusions.55
Thinking about the fear and helplessness I felt when I was sick helped me humanize my story so others could relate to it. I wrote of our family Christmas cut short by my illness, of the hopelessness I felt after my appendectomy didn’t relieve my pain, and of the long, lonely days I spent separated from my family while I fought my infection. The hardest parts to write were descriptions such as these:
Michael knew that I wasn’t thinking straight, and he also knew that I was sicker than he’d ever seen me. I was whimpering in pain, and that was unusual too—I’d grown up with childhood arthritis and systemic lupus and had a higher-than-average ability to tolerate pain. I hadn’t moved from our bed since he’d brought me home from the hospital—I hadn’t even been able to hold our children on my lap because their weight would have caused intolerable pain. Instead, three-year-old Lucas and one-year-old Emily had been visiting my bedside, stroking my hair and placing small toys beside me to cheer me up.56
Michael could see that something was wrong. He took me to see a doctor on 30 December. By that time, I could not stand up and he had to half-carry me to the car. Our one-year-old daughter, Emily, our three-year-old son, Lucas, and my mother-in-law, Barbara, stood in the window and watched us go. I waved at them and had the horrible feeling that I might not see my children again.57
On September 11, 2012, I shared my patient narrative in a hotel banquet hall. Health care professionals sat at linen-covered tables, and a videographer filmed me from the back of the room. I choked up only once: when I read the passage about my children standing in the window and watching me leave. During the question-and-answer session, one of my former nurses ran up onto the stage and hugged me. In my speech, I had said I would never forget her because when I was sick she told me that I reminded her of her best friend and that she was going to take care of me. It felt cathartic to share my experience, but not everyone at the session appreciated my story. The day after my presentation, one of the event organizers called me and said that some leaders from the health authority and the hospital felt put on the spot and embarrassed by what I said. She said that I should take the name of the hospital out of my story. I thought that was odd, as there is only one hospital in my community. She replied that I could easily remove my community from my story as well. Frustrated, I explained that asking me to censor my patient experience was inappropriate. A patient story, I reasoned, is about personal experience, not public relations. Later, in an email to the Leader of Patient Experience, I said:
It is unfortunate that [health authority] directors were uncomfortable with the content of my speech, but that is not my concern. I am sure that they would have been much more uncomfortable if they had to live my experience. I am sharing my story at [health authority] events as a way to assist the health authority. If [the health authority] is uncomfortable with this then it would be better if I were not asked to participate in [health authority] events where a patient perspective is desired.58
The Leader of Patient Experience understood my frustration. She agreed that my story was mine to tell, and that it was up to the health authority to decide whether they wanted to hear it. She told me that, as far as she knew, I was the first patient ever to share a personal health care experience at a learning session or conference at the health authority. The entire exchange made me ponder how Michael and I could best use our story as a catalyst for change.
After I completed my two-year term on the Patient Advisory Committee, I wrote a blog post about it for British Columbia’s province-wide patient engagement organization, Patient Voices Network. The post read in part:
Ten years ago I wouldn’t have believed that a patient could question the way a hospital functioned and, as a result, be invited to participate in improving the health care system. That’s what happened to me during my two years with the [health authority] Patient Advisory Committee. I came to the committee, at the suggestion of [health authority] representatives, after an extremely negative health care experience. It was exciting to turn that negative into a positive and help improve the system for the benefit of my family and my community.59
The focusing stage of the model of transformation through writing naturally segues into the understanding stage as the writer clarifies the main points of the story, puts the events of the narrative into sequence, and formulates a meaningful second story.60 The blog post above shows how I was able to reach a place of understanding that allowed me to collaborate with leaders at my health authority. Together, we were then able to use my patient narrative as a tool to help other patients. Once I reached this stage, I was able to work with health care leaders to create processes—including a checklist for hospital staff to review with newly diagnosed C. difficile patients and their families—to help increase communication and shared understanding between caregivers and patients. I suspect that my transition to this type of meaningful work would not have happened as smoothly if the event organizer who raised concerns about my presentation had not shared her perspective with me. Our conversation inspired me to reflect on my patient narrative, on how it affected people and on how their interpretation of it affected me. I may not have seen a clear path to my second story without that early conversation and subsequent reflection. The dialogue we engaged in was valuable in that it marked the place where my journey from first to second story began to entwine with the health authority’s own patient engagement journey. The inspiration for shared goals and meaningful change was not my patient narrative itself, but the resulting dialogue about my patient narrative.
Between 2012 and 2014, I had several more opportunities to share my story publicly. I spoke at a provincial meeting about hand hygiene in the health care system. The Leader of Patient Experience and I co-presented at the annual conference of British Columbia’s Provincial Infection Control Network. I also co-led a session at LABCON 2013, a national laboratory conference, where I collaborated with health authority staff and clinicians to share both my patient narrative and the patient care improvements implemented due to my experience.61 Finally, in October 2014, I worked with the Leader of Patient Experience and my health authority’s communications department to create a staff education video. By then I was comfortable with presenting my story as a general learning tool, but I still questioned and resisted attempts to modify or sanitize my story. For example, when the multimedia team suggested incorporating flashbacks and costume changes into the video, I told them that I was not an actor but a patient partner, and their proposed approach did not reflect my experience. I also removed some of the “helpful hints” the health authority wanted to include at the end of the video because I felt they linked to the health authority’s narrative, not to my own. The people I worked with were respectful and accommodating—after all, we had the same goal of wanting to effect positive change to benefit patients and families. My speaking notes for the video project include the following observations:
For Mike and me, our ideal scenario is that if this happened to us today, I would go to Emergency, list my symptoms and every symptom would be written down. Based on the information I provided they would find the C. difficile and begin treating it. I would not get as sick, I would receive excellent care and I would go home to my family much sooner. This is what we hope is happening now, as a result of our work to tell our story and to help make change.
I was terrified to come back to this hospital. But this is everyone’s hospital. The nurses and doctors who cared for me when I was sick depend on this hospital, and so do their families. I know that none of them would have wanted to go through what we went through. We’re all in this together. I encourage patients to tell their stories and I encourage health care professionals to welcome those stories. Communication is the key.62
I wrote and shared my patient narrative because I wanted something good to come out of a bad thing that happened to me. I wanted to create something positive for my family and for other families in my region. In short, I wanted to tell my story to improve the care experience for others—to ensure that my experience would not be theirs, too. This goal of improved experience was also the goal of my hospital and my health authority. Within the context of my story and my health authority’s own overarching narrative about creating the best possible experience for patients, we found common ground, opened dialogue, and collaborated on meaningful health care improvement. This partnership proved effective largely because of the champion I had in the health authority’s (now retired) Leader of Patient Experience, who helped protect my voice while it was just beginning to tell my story. The steps she took to support me, to protect my story and to make me feel safe reflect the ethical guidelines that narrative medicine founder Charon and narrative medicine scholar Peterkin underline in their work. Charon notes that when patients share their experiences, whoever listens “holds a profound responsibility not to exploit, not to expropriate, not to use the other for one’s own ends.”63 In my case, the Leader of Patient Experience showed this responsibility in all of our interactions. When I first shared my experience with her, she listened carefully, apologized, and asked what she, and by extension the health authority, could do to help make things right. Later, as I moved through the stages of the model of transformation through writing, she steadfastly supported me, described how my patient narrative could be a catalyst for change, and helped me to navigate the power dynamics within the health authority so I could tell my story directly to those who had cared for me. Throughout the time we worked together, she facilitated relationship building with clinical and administrative leaders, reinforced the value of my lived experience (and the value of patient experience narratives overall), and supported my decisions on how and when I would allow the health authority to use or retell my experience. She motivated me to keep sharing my story for the greater good, and she ultimately helped to restore my faith and trust in the health care system.
Telling my story to others forced me to be vulnerable. Exploring the layers of my vulnerability inspired me to move beyond venting to a place where I could open an ongoing conversation with health care leaders, notice new integrations in the narrative as the conversation progressed, and share my experience with the goal of improving the overall patient experience. Uncovering my “second story” revealed a truth that went beyond my own Self to become an opportunity for reflexivity that also proved useful to other patients and families. The model of transformation through writing was helpful to me in this process, and may be useful to others who wish to share their stories.
This article examines my participation in a broadening movement in the health care system to privilege patient voices, to enhance understanding of patient engagement and its role, and to contextualize the autoethnographic story by determining ways patients may also present their lived experiences/stories as narratives of healing and possibility. My goal in sharing my story is that this research will contribute to building social theory, advancing social policy, and centralizing patient experience narratives—and dialogue about these narratives—within the multiple layers of health care planning and delivery.
There are obvious limitations to my research. It is important to acknowledge that I am a middle-aged, university-educated white woman with considerable privilege, and I am quite comfortable navigating the medical system. I do not speak for all patients, and my family does not speak for all families. However, mapping my patient journey from first story to second story demonstrates how the process of narrative writing can contribute to greater connection between health care providers and patients, and can potentially open dialogue that leads to healing and possibility. Further research is required to learn how dialogue around patient narratives is happening within the health care system, and how the narrative journeys of patients and those who care for them can help to inspire change to benefit patients, their families, and the larger community.
Reinekke Lengelle and Frans Meijers, “Mystery to Mastery: An Exploration of What Happens in the Black Box of Writing and Healing,” Journal of Poetry Therapy 22, no. 2 (June 2009): 57–75. http://dx.doi.org/10.1080/08893670903072935
Adrienne Mercer Breen, unpublished memoir, June 2018.
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