“WHY ARE YOU CRYING”

For integrating Narrative Medicine within children’s cancer treatment to direct late traumatic outcomes on parents and caregivers.

EVERY PATIENT HAS A STORY:

“It is more important to know what sort of person has a disease than to know what sort of disease a person has.” – Hippocrates, The Father of Medicine

At the intersection of humanities and science, Narrative Medicine is a person-centered approach to understanding patients’ lives, caring for caregivers, and giving voice to those suffering (Charon, “Narrative Medicine”). The Narrative Medicine approach to illness experience is a way to provide holistic therapy that considers the individual as a whole. Beyond a patient’s physical symptoms comes their stories, which illuminate the challenges faced throughout illnesses and treatments. These stories can be transformative in improving care, as recognizing mental and social well-being during a health emergency is vital to the patient-physician relationship. When providers pay close attention to these stories it can enhance their listening and observation skills, expanding their view of patients as more than medical histories. Moreover, Narrative promotes empathy in the provider who can then catch outlying or unforeseen ailments outside of the already-noted medical tragedy, as the provider will approach the patient by asking how they can help them as a person rather than only how they can treat the illness.

When a patient encounters a medical emergency, the entire family becomes the patient. And when the patient is a child, parents and guardians are expected to become medically educated if not trained within the situation to prepare for caregiving while full of fear and despair. They must grieve the life that continues without them as they lie waiting in a medical purgatory, their child hanging in the balance. Parents and guardians of severely sick children should receive preventive care to address the potential of developing mental health issues resulting from experiencing a child go through severe illness and treatments. One common health issue parents and guardians of severely sick children experience is Post Traumatic Stress Disorder. To address the potential for mental health struggles such as PTSD associated with illness and survivorship, Narrative Medicine is a promising approach for intervention and preventive care of the parents and guardians of these children. Furthermore, offering preventive care to parents and guardians is important because focusing only on the child’s illness overlooks biopsychosocial and humanistic interconnectedness when this connection is necessary to help navigate, if not help negate, adverse health consequences to families of such traumas.

HONORING THE STORIES:

“There is one and only one goal for all of us—to ensure that all our intellectual efforts are directed toward the relief of humanity’s suffering.”- Dr. Azra Raza, Professor of Medicine, and Director of the MDS Center at Columbia University

As life goes, medical emergencies can fall upon anyone. In these instances, we are taught to seek guidance and care from the best practitioners we are able. In such care, we hope the physician we come to work with can give us the most proven treatments possible in the timeliest of manners. It is pertinent to us that our reliance and trust, if not life, is given over to the hands of the unknown, our physicians, who then carry the weight of their medical knowledge to aid and even save our lives. As patients in an emergency, we approach practitioners with extraordinarily complicated and personal narratives not only through the physical findings of illness, but with our words, gestures, and even silences outside of the illness (Charon, “Narrative Medicine”). We sit in a stark medical environment feeling blindsided with information overload and panic at the diagnosis, listening to the practitioner’s plan of action and nodding in agreeance, while our minds race to all other aspects of our lives and how we will function and cope outside of the illness itself. Worry and anguish over the consequences of diagnosis to all other aspects of our lives is a concept that cannot as easily be deciphered and acted on by providers as the physical illness itself. We have a lot to tell about our situations, while we expect doctors to have very demanding listening and interpretation skills; yet without the physician broadening their view of illness and the patient, they can miss opportunities to catch or curtail the symptoms of trauma patients and their families experience by a life-threatening medical event.

In children’s cancer, families’ worlds often come to a stop. As parents, we sense the threat of death for our child and experience despair due to this uncontrollable event, which results in significant psychological distress (Rosenberg). From the near of family and careers to the far of picking up some groceries or mail, our humble and desperate patient nature enters such emergencies full of extensive emotions, which typically become backburnered as to care for the physical part of our child’s crisis. Our lives are handed over to an allopathic system that will treat our child’s symptoms and maladies. However, what will happen to our homes? Our careers? Our bills? Or our education? The rest of our family members? Pets? Our entire lives outside of illness? And especially then, our mental health? To this end, we seek care from providers that includes conversational techniques that will elicit our narratives, lest we lose humanness along the way or, worse, suffer traumas later on. 

Throughout my child’s cancer journey, I experienced numerous occasions of physician bewilderment or dismissal at my parental grief and personal responses. There were numerous warning signs of Post-Traumatic Stress symptoms I was personally unable to recognize throughout my child’s treatment process that a healthcare team unquestionably could have recognized had there been protocols, screenings, and early intervention. I became increasingly startled and frightened by hospital personnel, I avoided medical training multiple times due to overwhelming fear and sadness, I became irritable and anxious at every check in with the lead doctor on my child’s team, and I started having nightmares about my child dying. I was constantly trying to find places to grieve and cry, which was nearly impossible in a live-in hospital setting. It felt like the world was shrinking around me and my only home was the imprisonment of a cancer ward, where I watched children around us suffer and pass away, wondering when it would be my child’s turn. I was nauseated, dizzy, and would tremble in a constant state of fright that made me feel shame and guilt, hardly ever sleeping, and could almost never eat. Then worse, I became extremely forgetful about anything to do with my child’s cancer and could not talk about or confront it with anyone outside of the hospital setting. My intense distress was often only approached by providers with curiousness as to why I was not seeming or feeling more content with how well treatment was going for my child. In response, I learned to numb my feelings not only to be brave and care for my child, but to appease providers confusion at my emotions, while I mentally deteriorated with symptoms that interfered with my daily routines, causing physical and mental impairments; later to be diagnosed as PTSD.  

It took years into my child’s survivorship and at grave disablement for anyone to recognize I had been suffering severe latent trauma from my child’s cancer experience. Since for my child survivorship of his original cancer was not considered until six years post-treatment without any relapse, the end of the medical interventions did not prepare us for the aftermath of waiting, or any type of “new normal.” My child had to be checked weekly, then monthly, bi- monthly, every six months, and then the long awaited one-year checkups of which will now be lifelong.

A few years after treatment ended, I had to once again head back to the same unit my child received chemotherapies at, waiting in the same room as all the other families and children awaiting their own treatments. I was finally called back to the same room we had sat in years prior during our own treatment with cancer memories flooding me and waiting for the results of every test and scan. The lead of my child’s team finally came in and I was nauseated waiting to hear if my child was again “good to go” until the next year. And we were indeed this year, in the clear. Upon the news I involuntarily burst into tears, at which our provider looked at me, head crooked, and said in sheer confusion, “Why are you crying?” and then “…aren’t you happy?”.

At this moment, I felt utter alienation from the very people who were around extraordinary amounts of suffering on a daily basis, and yet still did not seem to grasp the gravity of the disease’s effects outside of the physical. I became aware that the very people who saved my child’s life had no understanding of the suffering that can occur on the part of care that remains sternly scientific and methodological. To mend this prevalent disconnect between the patient-physician relationship medical providers should realize how patient narrative can be an appropriate and invaluable response to patient care and intervention.

LEARNING TO EMPATHIZE:

“Medicine is not only a science; it is also an art. It does not consist of compounding pills and plasters; it deals with the very processes of life, which must be understood before they may be guided”.- Paracelsus, 16th century alchemist and physician

The importance of narrative knowledge has been realized across disciplines. A narrative-centered framework can give physicians new skills and methods that can help them understand the consequences and meanings of illness for individuals (Charon “Narrative Medicine”). Narrative can be understood as a spoken or written account of real-life events told from the viewpoint of someone who experienced them (Dohan et al.). However, the territory of addressing mental needs in illness and survivorship is not as cleanly navigated. To challenge “a reductionist, fragmented medicine that holds little regard for the singular aspects of a person’s life” and protest the “social injustice of the global healthcare system” come six basic principles of Narrative Medicine; “intersubjectivity, relationality, personhood and embodiment, action toward justice, close reading (or slow looking), and creativity,” premising that healthcare can be improved by such medicine because “narrative competence can widen the clinical gaze to include personal and social elements of patients’ lives vital to the tasks of healing” (Charon “The Principles and Practice”).

Even after a child’s cancer treatment is complete, parents often exhibit symptoms of Post-Traumatic Stress Disorder (Norberg). Post-traumatic stress disorder “is a severe disorder, and symptoms such as sleep problems, irritability, outbursts of anger, difficulty in concentration, avoidance of people or activities, and restricted feelings can easily impair the daily functioning of parents” and also “may disrupt the patient-physician relationship” (Cerit). Risk factors associated with PTSD in parents and caregivers are well documented and include high anxiety levels. The strongest predictor of post-traumatic stress symptoms is the anxiety of perceived life threat, perceived treatment intensity, and lack of social support (Kazak). The rate and risk factors of PTSD among mothers of children with cancer helps to understand the importance of clinicians recognizing PTSD risk factors early on in treatment (Cerit 996). A recent systemic review of parents of childhood cancer survivors noted that 21- 44% of parents experience severe post-traumatic stress symptoms (Ljungman). Developing methods for intervening early in identifying predictors and confronting disease-related distress while they can still be influential would assist in deterring these risks (Norberg 80).

Supporting other methods such as Narrative Medicine is crucial to catching issues early on, which will have a significant effect in the long term given the incredible number of families that suffer disease-related stress and illness post-treatment. Through clinical stories, science and humanity can find a way to connect, and a values-based method can be just as critical as an evidence-based one. Focusing on these principles within the patient-physician relationship has the potential to improve familial health outcomes. Acknowledging how a medical provider responds to family within lifelong health impacts can, in turn, have lifelong effects from the response. The values-based practice framework offers information that can support self-awareness, reflective practice, and exploration of the values of the provider and the patient. This can bring understanding to both patient and provider to help them better interact for more positive outcomes (Fulford 24). The reality of the need for different or more approaches than are currently used has also been shown through multiple survivor workshops (Denning Appendix B). If humanistic awareness is lacking within the medical field it drastically alters the outcomes within the healthcare-patient relationship, which encourages patients to distrust the system, a detriment to both the provider and the patient.  

HONING NEW PERSPECTIVES:

“I need you in ways that are both ancient and new.” – Sarah Sasson, Clinical Immunologist/Immunopathologist and Scientia Senior Lecturer, Kirby Institute

Scientifically and evidence-proven medicine is essential to treating symptoms and conditions, and complementary services do indeed play a role, as shown by social work involvement within the healthcare system, helping patients understand their illness and providing them with the resources available to cope with emotional, financial, and social needs that arise from a diagnosis (Pockett). The focus of healthcare professionals is indubitably on treating the disease as swiftly and efficiently as possible. Healthcare professionals make innumerous decisions that depend on significant variables and highly regulated protocols. Western (allopathic) Medicine is that of rigorous conventional concern proven to have significantly improved healthcare and patients’ lives (Tabish, ch 5). There are teams of physicians that treat diseases as cancer, each with their duty to treat some part of the disease. This orthodox approach has been crucial to saving lives, and through it, we have found cancer survival rates to be at their greatest, with the United States hosting some of the world’s best cancer treatment centers. (NCI- National Cancer Institute).

Within the research of Narrative Medicine and its uses with patients, the issue of utilitarian aims and the need for more substantial research on it become problematic. Straying from medical experience and clinical protocols can lead to overstepping professional boundaries and cause legal chaos within the field, and not everyone may view their life as a narrative (O’Mahony 619). The issue of a medical system full of company corruption that alters medical research is a significant one that negatively affects the provider-patient relationship. Significant research on Narrative Medicine can better be done by looking at ways to correct the more extensive system failures as the field requires (Lo ch 6).

Nevertheless, with clear and specific protocols within research and practice, Narrative Medicine can carve a new path within the already well-aged and groomed care pathways, joining them together. Not learning critical reflection and empathetic responses to patients can be as damaging as a medical error, and a humanistic approach should be considered necessary to be practiced alongside medical protocols (Stein, 11). Physicians who have improved clinical care through narratives can understand or recover from mistakes within their practices. By hearing patients’ stories which reflect that doctors are not giving enough in terms of humanness, we can ascertain that empathy and critical self-reflection are vital to a doctor’s education (Stein, 11).

Narrative Medicine educational interventions serve as an important means of preparing medical students to engage in a shared decision-making process with their patients by increasing their “narrative competence” (Charon, “Narrative Medicine”). Becoming trustworthy and valuable as a partner to a patient undergoing an ordeal differs from being a technician. It is also different from being a friend. Students and practitioners’ aim is to be on the patient’s side and in service to them (Charon, “Honoring the Stories of Illness”). Suppose providers can approach their patients’ experiences of illness with more understanding and compassion. In that case, there can be positive changes in perspective, reflection, and reactions which may subsequently direct the outcome of these suffering families. Recognizing and absorbing patient stories as they are undergoing care is often undervalued. Biology is only one component of a patient, yet biography, the lived experience of the patient, is just as pertinent. With full integration of a patient’s biology as well as their biography, provider care of patients can be transformative for all involved. If biology remains privileged over biography, rather than mending the gap between evidenced based care and humanities, the divide will continue to build a system disconnected from whom they serve.

RECONCILIATION:

“Speak a new language so that the world will be a new world”- Rumi

Medicine is ever-changing, and our methods of training doctors and caring for patients should ever evolve with it. Charon pioneered most of the innovations in the field of Narrative Medicine, including its adoption into the core curriculum at more than half of North American medical schools (Divinsky). Whether it be programs or retreats, the top schools in the country are utilizing storytelling to heal physician burnout and preserve natural empathy within medical school and residency. Practicing Narrative Medicine allows doctors to reconnect to their passion for helping others and to process the emotional stress of working with the severely ill. Narrative Medicine can enrich the doctor-patient relationship, improving patient care and enhancing doctor satisfaction, yet it can also save lives.

Our stories as patients offer insight and understanding, and through Narrative Medicine, there can be the ability for providers to save more than one life in a health crisis. By instead saying to parents or caregivers in the grips of tears, fears, and traumas, “I am here to listen,” the door to an environment of safety and trust can be opened for healing far outside of the primary patient and disease.     

Works Cited

Charon, Rita. “Narrative Medicine.” JAMA, vol. 286, no. 15, 2001, p. 1897., https://doi.org/10.1001/jama.286.15.1897.

Charon, Rita. The Principles and Practice of Narrative Medicine, Oxford University Press, New York, NY, 2017.

Charon, Rita. The Principles and Practice of Narrative Medicine. Oxford University Press, 2017.

Divinsky, Miriam. “Stories for Life Introduction to Narrative Medicine.” The College of Family Physicians of Canada, 53 , no. 2, Feb. 2007, pp. 203–205.

Dohan, Daniel, et al. “The Importance of Integrating Narrative into Health Care Decision Making.” Health Affairs, vol. 35, no. 4, 2016, pp. 720–725., https://doi.org/10.1377/hlthaff.2015.1373.

Dohan, Daniel, et al. “The Importance of Integrating Narrative into Health Care Decision Making.” Health Affairs, vol. 35, no. 4, 2016, pp. 720–725., https://doi.org/10.1377/hlthaff.2015.1373.

Greening, Leilani, and Laura Stoppelbein. “Brief Report: Pediatric Cancer, Parental Coping Style, and Risk for Depressive, Posttraumatic Stress, and Anxiety Symptoms.” Journal of Pediatric Psychology, vol. 32, no. 10, 2007, pp. 1272–1277., https://doi.org/10.1093/jpepsy/jsm057.

Karadeniz Cerit, Kıvılcım, et al. “Post-Traumatic Stress Disorder in Mothers of Children Who Have Undergone Cancer Surgery.” Pediatrics International, vol. 59, no. 9, 2017, pp. 996–1001., https://doi.org/10.1111/ped.13343.

Kazak, Anne E., et al. “Predicting Posttraumatic Stress Symptoms in Mothers and Fathers of Survivors of Childhood Cancers.” Journal of the American Academy of Child & Adolescent Psychiatry, vol. 37, no. 8, 1998, pp. 823–831., https://doi.org/10.1097/00004583-199808000-00012.

Lindahl Norberg, Annika, et al. “Early Avoidance of Disease- and Treatment-Related Distress Predicts Post-Traumatic Stress in Parents of Children with Cancer.” European Journal of Oncology Nursing, vol. 15, no. 1, 2011, pp. 80–84., https://doi.org/10.1016/j.ejon.2010.05.009.

Ljungman, Lisa, et al. “Long-Term Positive and Negative Psychological Late Effects for Parents of Childhood Cancer Survivors: A Systematic Review.” PLoS One, vol. 9, no. 7, 2014, https://doi.org/10.1371/journal.pone.0103340.

Lo, Bernard, and Marilyn J. Field. Conflict of Interest in Medical Research, Education, and Practice. National Academies Press, 2009.

Milota, M. M., et al. “Narrative Medicine as a Medical Education Tool: A Systematic Review.” Medical Teacher, vol. 41, no. 7, 2019, pp. 802–810., https://doi.org/10.1080/0142159x.2019.1584274.

NCI, NIH. “Find an NCI-Designated Cancer Center.” National Cancer Institute, https://www.cancer.gov/research/infrastructure/cancer-centers/find.

O’Mahony, Seamus. “Against Narrative Medicine.” Perspectives in Biology and Medicine, vol. 56, no. 4, 2013, pp. 611–619., https://doi.org/10.1353/pbm.2013.0032.

Pockett, Rosalie, et al. “Social Work Interventions in Cancer Care.” Australian Social Work, vol. 75, no. 2, 2020, pp. 137–151., https://doi.org/10.1080/0312407x.2020.1748673.

Rosenberg, Abby R., et al. “Psychological Distress in Parents of Children with Advanced Cancer.” JAMA Pediatrics, vol. 167, no. 6, 2013, p. 537., https://doi.org/10.1001/jamapediatrics.2013.628.

Stein, Michael. Accidental Kindness: A Doctor’s Notes on Empathy, Univ of North Carolina PR, S.l., 2022.

Tabish, Syed Amin. “Complementary and Alternative Healthcare: Is It Evidence-Based?” International Journal of Health and Sciences, vol. 2, no. 1, 2008, pp. V-IX.