NARRATIVE MEDICINE: A MODEL FOR COMPASSIONATE CARE

Aniisah Bibi Aboo Bakar Kara

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Imagine you have just broken your leg and now have a cast for a couple of weeks. The doctors advise taking it slow with your daily activities and prescribe painkillers to alleviate physical discomfort. Now, imagine hearing someone comforting you with that phrase we have all heard once in our lives: “It could have been worse”. While this often aims to encourage optimism and gratitude during adversity, it can also show a lack of empathy by minimizing your pain and overlooking the complex emotions you may be experiencing. What if instead, you were asked how this injury has affected you? Given the space to share your feelings, you might discuss your frustration at having to withdraw from a sports tournament you have trained for all year or cancel a long-planned trip with friends.

The need to be seen and heard by others is even more critical during vulnerable times like chronic illness. In an era of healthcare industry corporatization, where medical appointments often last only 15 minutes and trainings are increasingly competitive and intensive, it is essential for healthcare professionals to develop listening skills and empathy toward their patients, colleagues and, themselves.

Reflecting on why I wrote this article, I realised that it stemmed from my own experiences caring for loved ones. My dad battled heart disease and diabetes; a deadly combination that proved fatal. As one of his primary caregivers, I ensured that he took his medications, monitored his diabetes by pricking his fingers while he slept and reminded him constantly about his health to deter him from unhealthy habits. Throughout those years, what stands out in my memory is doctors constantly urging him not to ‘bury [his] head in the sand’ whenever he avoided eye contact during medical visits. Did any of them take the time to ask why he behaved that way? To the best of my recollection, none did.

Was he fearful about the future? Was he trying to appear strong to shield his family from pain? Even as his daughter, I mimicked the doctors’ actions, failing to ask him these crucial questions. I neglected to listen to what troubled him deep inside because, to us, he was just a vulnerable patient needing care and assistance. His identity as an individual and a proud trader seemed to vanish; he became solely our sick dad, giving us the authority to make decisions on his behalf.

During my Masters’ program, while studying biographies of breast cancer survivors, I encountered the field of narrative medicine. This field resonated deeply as it advocates for a reconsideration of how we care for the sick. Developed by Dr. Rita Charon at Columbia University, narrative medicine calls on healthcare providers to “recognize the plight of their patients, to extend their sympathy toward those who suffer and to join honestly and courageously with patients in their struggle toward recovery, with chronic illness or when facing death”.

(Narrative Medicine: Honoring Stories of Illness, Dr Charon Rita, 2006)

When patients enter the doctor’s office, they bring with them diverse economic, social, religious and cultural backgrounds that shape their identities. Can healthcare providers really comprehend these multiple realities? According to Dr Charon, this understanding is achievable through attentive listening to patients’ narratives. Frequently, patients present complex and ambiguous issues that cannot be resolved solely through a purely scientific approach.

Interviewing local female breast cancer survivors with the support of a local NGO revealed to me the fraught yet hopeful nature of these encounters. They recounted how illness profoundly affected their daily lives, especially their social interactions. Doctors who fail to listen to their patients overlook critical information that could aid diagnosis, reduce overall costs and alleviate patient suffering. For instance, endometriosis, a condition affecting women, can be left undiagnosed. A delayed diagnosis can lead to prolonged suffering and pain and may cause other physical and psychological problems. Medical practitioners trained in narrative medicine could offer compassionate support to those women and timely diagnoses by listening attentively to patients’ experiences, rather than relying solely on symptom checklists.

In narrative medicine programs, students learn to develop close reading skills, enhancing their ability to pay attention to patients’ experiences and body language. Creative writing is also integral, fostering reflection on personal experiences, including interactions with patients. Some physicians carry emotional burdens throughout their careers; this self-reflective practice is crucial as they navigate a journey filled with tragedy, pain, suffering, and hope. As Dr Charon emphasizes in her book, mastering close reading and creative writing demands practice, skills, and experience. It’s more than reading or writing fiction; it involves developing the ability to accept critique as well as respectfully critique others’ work.

One notable innovation by Dr Charon is the parallel chart used by medical students and healthcare professionals. This allows them to record personal feelings separately from the clinical patient chart. Instead of using medical jargon and numbers, they can describe aspects of the situation in two or three sentences. Other practices can also enhance doctor-patient relationships but listing them would require more space. For now, dear readers, I invite you to join me in practicing empathy and attentive listening with the most vulnerable members of our society and most importantly, with yourself.

Implementing this new economics of care in our local healthcare system could help produce more compassionate healthcare better equipped to support their patients. The real question remains whether health ministries and educational institutions are willing to adopt this innovative approach, which necessitates rethinking the current healthcare system.

 

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