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It is a common occurrence that in health care, people’s stories of illness are often neglected to focus on the presenting complaint. By doing this, clinicians provide purely biomedical care instead of holistic care. By engaging with a patient’s narrative, the clinician can simultaneously gather the necessary information to present a conclusive diagnosis while addressing any contextual issues that may influence the patient’s recovery. To illustrate the benefits of engaging with a patient’s narrative, a 60-year-old coloured male – who will be referred to as ‘Henry’ to preserve his anonymity – kindly agreed to recount his story of being diagnosed with, living with, and eventually overcoming cancer.
Since he is a close family friend and his illness was not hidden, it was easy to arrange a face-to-face interview where he comfortably and openly described his experience. The essay will provide a short definition of “narrative medicine” and why its application is necessary in health care practice, identify and analyse the key themes appearing within the narrative by referencing various journal articles, and will conclude by answering the initial essay question “what is the value of engaging with a patient’s narrative and meaning making in the process of providing health care?”The idea of engaging with a patient’s narrative during the health care process is a growing phenomenon called ‘narrative medicine’ and can be described as “treating each individual patient as a person with their own individual story, rather than a collection of symptoms” (PCC Institute for Health Professionals, 2017). Divinsky (2007) argues that the application of narrative medicine shows much promise as it aims to reduce the emotional burnout experienced by health professionals and nurture the empathy which often dwindles the longer one practice. This allows the clinician to hone their treatment suggestions and provide more comprehensive care.
By hearing the story surrounding the patient’s illness, the illness becomes contextualised and the clinician is provided with a better understanding of the circumstances experienced by the patient. In January 2016, Henry began feeling constant pains in his stomach. After visiting a general practitioner, he was referred to Groote Schuur Hospital (GSH) to have a positron emission topography (PET) scan, as two years prior Henry had suffered from throat cancer, and the doctor was concerned that it may be a relapse as standard medication had no effect on relieving his pain. Once the scans were done and the doctor had the results, Henry was told in a direct manner that he had stage four stomach cancer and it had spread within his body – particularly to the liver. He was shocked by this diagnosis and feared that he might die, as he had more friends who were suffering from cancer and did not survive than those that did. Henry then started aggressive chemotherapy in hopes that it would reduce or ideally kill the cancerous cells, however, he was not responding well and became very ill, lost roughly 36 kilograms (originally weighing 75 kilograms), and the cancer showed no signs of diminishing. He continued this treatment for 18 months (and was bedridden the entire time) until June 2017 when he was told that it was highly unlikely he would live past February 2018, however, he may be able to “have 3 extra months if he took an additional 17 aggressive chemotherapy sessions”. Henry refused to spend his seemingly last few months confined to a hospital, enduring a treatment that to him was doing more harm than good for the slight possibility of living a few months longer. He was released from GSH and returned home and decided to put his life in God’s hands, opting to use less conventional cancer treatments.
Shortly thereafter, Henry miraculously began gaining weight, his appetite returned, and he had more energy. This trend continued and in March 2018 he went to the oncology department in GSH to see his former oncologist. Everyone was astounded at his recovery, and when another CT scan was done, the cancer had completely regressed. Through knowing the story behind an illness, one can identify key themes within the patient’s life and how they affect the experience of being chronically ill. Throughout Henry’s journey of living with (and eventually overcoming) stage four stomach cancer, five key themes presented themselves: fear, hopelessness, family, spirituality, and optimism. Being both a father and a grandfather the fear of leaving his family was always present, even to the extent that he was afraid of falling asleep at night because he might not wake up. This was something he chose to keep to himself as he did not want to burden his family.
According to the American Cancer Association (2018), putting up a brave face is common occurrence among cancer patients, as they want to protect their loved ones from seeing the pain they may be feeling. If clinicians are aware of these fears within their patients, they can provide appropriate resources to help mitigate the feeling, thus providing more holistic care. Despite hiding this fear from his family, Henry heavily relied upon them for motivation during this difficult time. Family was also incredibly important during this time, as they not only provided irreplaceable support but also motivated him to get out of bed each day. They were a constant source of motivation to do whatever was needed to be healthy again. The involvement of his family in the management of his condition helped him stay positive and not feel completely isolated and provided a sense of normality in an otherwise abnormal situation. Thus, the promotion of familial support in patients living with chronic conditions helps to create a sense of comfort while aiding in preserving a sense of autonomy within the patient (Whitehead, et al. , 2017), thereby motivating the patient to adopt and adhere to positive health habits. Bearing this in mind it would seem obvious that health professionals must incorporate the patient’s family in their thought process when dealing with treatment options – consider how the patient in conjunction with their family will be affected emotionally, psychologically, and/or financially by certain treatments that the clinician may deem necessary. The more severe and/or chronic the disease, the greater affect it will have on the patient.
The chronicity and severity of his illness also caused him to reflect on his mortality and resulted in a confrontation of his faith – he described arguing with God and discussing the illness until he concluded that it was time to put all his trust in the Lord. Having an awareness of one’s own mortality is often liked to a sense of spirituality, especially regarding chronic illnesses (Mabena & Moodley, 2012). Giving himself over fully to his faith lead him to have a sense of optimism which spurred him to try alternative medication once his poor prognosis was delivered. This optimism allowed him to devote himself to helping his loved ones despite being weak and bolstered his spirit further once he noticed his condition was improving. By understanding the compounded emotional and psychological effect such an illness can have on someone in addition to the physical effect, health professionals can develop a more holistic plan of care. Understanding the context surrounding the patient and how they experience their illness provides clinicians with a source of qualitative data to determine which treatment methods are effective and change the way in which the clinician may decide to educate the patient – the health professional could tailor the information to align with the patient’s circumstances. (Divinsky, 2007)In summary, narrative medicine is an appropriate and efficient method of engaging with a patient’s narrative. This is valuable in the practice of health care as it allows the health professional to obtain information surrounding the psychological, emotional, and social aspect that the illness may have. This will allow health care professionals to create an inclusive treatment plan that incorporates aspects outside of physical health. This will improve the patient’s experience of both the health care system and living with a potentially severe and/or chronic illness. It also nurtures the clinician’s empathetic abilities, thus motivating the provision of a more accurate, tailored, and positive service to all patients.
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