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Lessons from narrative medicine: Cancer care will improve with narrative oncologyLessons from narrative medicine: Cancer care will improve with narrative oncology


 Department of Radiation Oncology, Cancer Centre, Kalinga Institute of Medical Sciences, Kalinga Institute of Industrial Technology (KIIT) University, Bhubaneswar, India

Date of Submission21-Jul-2020
Date of Decision15-Oct-2020
Date of Acceptance15-Oct-2020
Date of Web Publication14-Sep-2021

Correspondence Address:
Bidhu Kalyan Mohanti,
Kalinga Institute of Industrial Technology (KIIT) University
India
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/ijc.IJC_809_20

  Abstract 


Narrative medicine (NM) is a new discipline in healthcare that helps the patients and physicians to tell and listen to the accounts of disease, illness, and suffering. In the last 20 years, NM has moved into the realms of biomedical education, research, and training. The complexity of cancer management can gain from the medical humanism of NM. A new model of cancer care called narrative oncology (NO) with NM-based skill sets of attention, representation, and affiliation can build narrative competence, therapeutic relationship, and clinical trust. The oncologists, patients, and their family caregivers, and the cancer care health system will create an inclusive and empathetic eco-system. This paper outlines the broad framework of NM, which becomes narrative oncology for cancer medicine. The clinicians, nurses, health workers, and scientists should learn and implement this new discipline alongside their biomedical activities.


Keywords: Cancer care, lessons, medical humanism, narrative medicine, narrative oncology



How to cite this URL:
Mohanti BK. Lessons from narrative medicine: Cancer care will improve with narrative oncologyLessons from narrative medicine: Cancer care will improve with narrative oncology. Indian J Cancer [Epub ahead of print] [cited 2021 Sep 28]. Available from: https://www.indianjcancer.com/preprintarticle.asp?id=325984





  Introduction Top


The 21st century's biomedical world is realizing the significance of a patient's journey before and after a disease is diagnosed, which weighs over and above the diagnostic tests, radiologic images, and technologically appropriate clinical management. Meaningful communication with the patient, combined with an empathetic relationship, can embellish valuable perspectives in healthcare delivery.[1] What a patient narrates, and what a physician records become integral to patient care. In 2001, Rita Charon, a physician from Columbia University, USA described the term narrative medicine (NM), that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others.[2] From this initial conceptual framework, NM has moved into the realm of biomedical education, training, and research in the last two decades. This new discipline in healthcare helps the patients and physicians to tell and listen to the complex accounts of illness.[3],[4]

Narrative Medicine for an oncologist

How does NM fit into cancer care? Every oncologist, during clinical management, will deal with cancer patients and their family caregivers at two levels; honesty versus hope, fear versus assurance, and ownership versus objectivity.

“The history is the key to diagnosis.” Medical history taking was fundamental to patient care in the mid-nineteenth century. Since that time, physical examination, and technology of biomedical science, such as records of endoscopy, computerized tomography (CT) scan report, bone marrow study, histopathology got incrementally added to the patient's history.[5] During training and in the subsequent role as a cancer specialist, history taking and physical examination (H&P) are utilized routinely. Broadly, there are five steps in cancer-specific H&P: 1) obtaining a cancer-focused history, 2) information for a possible tumor type, 3) tumor site-directed clinical examination, 4) determining the likely diagnostic tests, and 5) appropriate documentation of disease stage and treatment options.[6] Such documentation of H&P and communication are part of the teaching and training in clinical oncology, with the purpose to provide information on diagnosis, stage, treatments, financial costs of treatment(s), possible morbidities, and a prognosis on disease control and survival.[7] However, it is rarely encouraged to build up a patient-physician relationship or conversation. In the process, cancer care often fails to extend dignity or recognition to a patient or the family caregiver.

The framework of medical education and training, from the post-World War II period, places emphasis on comprehending the technological and scientific advancements. This has diminished the utility of the humanistic side in our delivery of healthcare. Conversely, the complexity of cancer management can derive benefits from NM's commitment to social justice and inclusiveness.[1],[2],[3],[4] An average cancer patient, whether in early stage or with advanced disease, has a lifetime ranging from a few months to many years. In order to uphold the dignity and lived experience of cancer patients, the cancer care provider's skill with NM has the scope to improve the cancer care model.

Lessons of Narrative Medicine for cancer care

Benjamin W Corn, Editor of the Narrative Oncology section, Practical Radiation Oncology journal of American Society of Radiation Oncology (ASTRO) states, “Our patients make many adjustments along their journey…. They get used to a new world over which they have little dominion”.[8] The cancer specialists, in clinical, non-clinical, and basic fields, get drawn to the opportunities in the cutting-edge biomedical world. One French national survey showed that the determining factors to join cancer medicine specialties were (a) cross-sectional nature of the field, (b) the depth and variety of human relations, and (c) multi-profession and multidisciplinary field of work.[9] Hence, lessons of NM given to these specialists will add to their goals and purpose.

Along with the scientific ability, technological power, and the skill at one's command, the physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient's behalf.[2] In order to establish the scientific approach to NM, Charon and her group broadly enumerate 3 acts: attention, representation, and affiliation.[10] Attention gives the narrative competence in clinical practice, where the doctor, nurse, and other significant health workers are going to absorb all that their patients (and the caregivers) have to tell. Representation is a step towards narrative writing when the complex clinical notes carry a parallel chart of humanistic expressions, which renders the doctor audible, the patient visible, and the treatment is transformed into a healing process between them. Affiliation is an act that follows in the steps of attention and representation. The listening to patients, the writing and communication with patients and their caregivers, converge to a state of the therapeutic relationship between patients, clinicians, and the healthcare team.

For this skill set to be achieved, the first objective lesson is to learn and practice listening to the patient's narrative, as exemplified in the case summary below.

Mrs. DA, a 48-year-old woman, with a history of Crohn's disease, was diagnosed with oral cancer and was treated by surgery and postoperative (PORT) for her pathologic stage IVA disease. Adjuvant chemotherapy was not given in view of Crohn's disease.

One month after treatment completion, she presented with complaints of fever, cough, and chest pain. Chest X-ray and CT chest revealed multiple bilateral cavitating lung metastases. Investigations revealed a superadded fungal infection. Two weeks later she developed skin nodules in the left axilla and upper lip. Fine-needle aspiration cytology (FNAC) from axillary swelling showed metastasis. Within one week, she developed multiple similar skin nodules over the scalp, chest, and thighs, and an ulcerative lesion on the right side of the oral cavity. At this stage, Mrs. DA opted for palliative/best supportive care. She was prescribed pain relief, sedation, and co-drugs, with advice to come for palliative care assessment on weekly basis.

As she stayed nearby the hospital, Mrs. DA started coming into the Radiation Oncology treatment area, where she had spent a little over 6 weeks to receive the PORT. She would meet a nurse or a doctor, telling about her pain, nausea, insomnia, or physical weakness. After a conversation, she would get up, lean on the shoulder of her accompanying son or husband, “I am not afraid of my end, when you talk to me or touch me, I feel good”. She died at home after a month. During this short period, the Radiation Oncology team learned a lot about her work life, family support, and a strong attribute of self-awareness in adversity.

Cancer patients are invariably in need of long-term care, over months to years, often outliving the treating oncologist, because of improved treatment results.[11] In such a circumstance, strong doctor-patient, and treating team-patient-caregiver relationships develop. Patients can start looking at the doctor, nurse, and the cancer care team as other human beings, and may even teach a few aspects of their illness and its trajectory in the different phases. Researches into the quality of life (QOL) and survivorship issues since the 1990s have given insights into subjective and patient-reported outcomes (PRO).[12]

The addition of NM, or to be more precise the inclusion of Narrative Oncology (NO), can form the troika of QOL, PRO, and NO as a new frontier of the cancer care paradigm. With these skill sets, the oncology community can set humanistic goals. [Figure 1] is a depiction of the various aspects which can directly benefit cancer care.[2],[3],[6],[8]
Figure 1: Narrative medicine: core skill sets and attributes in cancer care [Modelled on ref.[2],[3],[4],[13]]

Click here to view


Besides the attributes gained by all sides as mentioned in [Figure 1], the NM/NO can enhance the public trust, which has declined, in spite of tremendous advancements in the delivery of healthcare.[1],[2] The defined parameters of diagnostic and therapeutic approaches demonstrate incremental benefits in cancer cure and survival.[11] However, in the process, cancer management is getting increasingly fragmented, corporatized, and consumer-driven, which makes the oncology providers deliver care in a biomedical context. This bundles the patients into the confines of symptoms, signs, responses, toxicities, and measurable results. Simultaneous recognition of the biopsychosocial dimension of a cancer patient, during and after the cancer therapy, or, even when there is an advanced stage, can become inclusive of cancer management. Narratives gathered from the patients and their family caregivers, and the narrative competence of the oncology team will not distract or deviate from evidence-based cancer care.[13]

The scientists and researchers are intimately engaged in the advancement of oncology. The impact of NM on these groups, who carry out fundamental and front-line tasks for diagnostic tests, molecular targeting, genetic mapping, and therapeutic discoveries, is unexplored, and yet can be substantial.[3] Although, NM has evolved to benefit the clinical practice domains of physicians, dentists, and nurses, the non-clinical personnel in cancer medicine may draw valuable lessons. Narrative-based education for scientists and researchers can contribute in following ways:

  1. empathy and understanding of cancer patient/oncologist
  2. improve communication, team participation, and collaboration
  3. concept development and writing competencies
  4. enhance cross-cultural awareness and ethical research.



  Conclusion Top


The time has come for the oncology community to integrate humanistic goals into the cancer management health system. Alongside disease mechanisms, molecular pathogenesis, and quantitative outcomes, research designed to capture and analyze the subjective experience of cancer patients has validated the importance of the relationship between cancer patients and their professional care providers.[14] This model of therapeutic bond through narratives of illness and hope builds a new channel of cancer care called narrative oncology.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Divinsky M. Stories for life: Introduction to narrative medicine. Can Fam Physician 2007;53:203-5, 209-11.  Back to cited text no. 1
    
2.
Charon R. The patient-physician relationship. Narrative medicine: A model for empathy, reflection, profession, and trust. JAMA 2001;286:1897-902.  Back to cited text no. 2
    
3.
Remein CD, Childs E, Pasco JC, Trinquart L, Flynn DB, Wingerter SL, et al. Content and outcomes of narrative medicine programmes: A systematic review of the literature through 2019. BMJ Open 2020;10:e031568.  Back to cited text no. 3
    
4.
Charon R, DasGupta S, Hermann N, Irvine C, Marcus ER, Colón ER, et al. The Principles and Practice of Narrative Medicine. New York, NY: Oxford University Press; 2017.  Back to cited text no. 4
    
5.
Gillis J. The history of the patient history since 1850. Bull Hist Med 2006;80:490-512.  Back to cited text no. 5
    
6.
Rosenzweig MQ, Gardner D, Griffith B. The history and physical in cancer care: A primer for the oncology advanced practitioner. J Adv Pract Oncol 2014;5:262-8.  Back to cited text no. 6
    
7.
Wenger NS, Vespa PM. Ethical issues in patient-physician communication about therapy for cancer: Professional responsibilities of the oncologist. Oncologist 2010;15(Suppl 1):43-8.  Back to cited text no. 7
    
8.
Corn BW. The gift of medicine. Pract Radiat Oncol 2015;5:2-3.  Back to cited text no. 8
    
9.
Faivre JC, Bibault JE, Bellesoeur A, Salleron J, Wack M, Biau J, et al. Choosing a career in oncology: Results of a nationwide cross-sectional study. BMC Med Educ 2018;18:15.  Back to cited text no. 9
    
10.
Charon R. What to do with stories: The sciences of narrative medicine. Can Fam Physician 2007;53:1265-7.  Back to cited text no. 10
    
11.
Allemani C, Matsuda T, Di Carlo V, Harewood R, Matz M, Nikšić M, et al. Global surveillance of trends in cancer survival 2000-14 (CONCORD-3): Analysis of individual records for 37 513 025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries. Lancet 2018;391:1023-1075.  Back to cited text no. 11
    
12.
Gordon BE, Chen RC. Patient-reported outcomes in cancer survivorship. Acta Oncol 2017;56:166-73.  Back to cited text no. 12
    
13.
Zaharias G. Narrative-based medicine and the general practice consultation: Narrative-based medicine 2. Can Fam Physician 2018;64:286-290.  Back to cited text no. 13
    
14.
Schapira L. The essential elements of a therapeutic presence. Cancer 2013;119:1609-10.  Back to cited text no. 14
    


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