By - Elizabeth Katanov, Edited By - Urooj Khan
“Every illness is not a set of pathologies but a personal story” (Fadiman 1997). In Western medicine, the health doctrine comprises treating illness at all costs, regardless of side effects or complications. The strict focus on chemical and biological interactions on a molecular level drives modern treatments and medication but often leaves out other human components. One of these includes the cultural perspective through which illness is seen. This is all the more important to healthcare workers who practice in multicultural cities around the world. Similarly, a patient’s personal values could also significantly affect treatment options to ensure the highest quality of care and life outcome.
Illness is not seen in the same way across cultures. For example, in American culture, epilepsy is seen as a seizure disease caused by disturbed nerve cell activity. However, the Hmong culture (an ethnic group from the mountainous regions of China) sees the disease as a gifted ability to communicate with gods. This stark difference in perspective and belief would consequently affect the actions taken to aid one with such symptoms. In Anne Fadiman’s book “The Spirit Catches You and You Fall Down,” the main plot follows a Hmong child with epilepsy, her American doctors, and her very traditional parents (Fadiman 1997). The parents distrust American healthcare workers, wary of the fact that doctors see their ‘gifted’ child as a broken human being that needs to be fixed. As a result, they avoid giving medications prescribed to their daughter and make no effort to understand the disease from a Western standpoint. Eventually, child protective services separate the daughter from her parents to be appropriately treated.
Although a tragic story, it leaves much to analyze. In the book, Fadiman mentions that Lia, the daughter, enjoyed her parents’ company and felt comforted by their constant attention. And yet, CPS took Lia from her family on the grounds of neglect. It can be argued that the main factor affecting her quality of life was not the seizures but the clash between two cultures and how their competing methods affected her sense of stability and security. If Lia would be more fluent in English or perhaps older, it would have been necessary to take her values into account before making such a concrete decision. This way, she could articulate whether she prefers having seizures and an increased risk of dying but being surrounded by a loving family, or if she wants to have her epilepsy contained and be placed in a brand new, disorienting environment altogether.
The latter situation is known to many patients. As an illness becomes terminal, healthcare professionals need to consider the patient’s perspective and desired lifestyle before proceeding with the action. For example, suppose a patient values quality family time. In that case, a physician may choose not to go forward with a very intensive procedure or treatment plan, which would disrupt the family’s time together. However, if a patient wishes to be as mobile and have as much physical capacity as possible, then a more rigorous medical approach may be considered to help those goals be met.
To help consider the values of a patient in relation to their medical care and quality of life, Israeli-American Sociologist Aaron Antonovsky developed his Sense of Coherence Scale and Orientation to Life Questionnaire. These tools focus on three aspects of care: comprehensibility, manageability, and meaningfulness (Eriksson et al. 2016). In the comprehensibility domain, questions are asked to assess whether a patient feels understood by those around them or if they feel helpless in the situation. To measure manageability, questions are asked about a patient’s previous perseverance and how they listen to their gut instinct. Questions that help analyze a patient’s values include asking about the meaningfulness of everyday activities and how satisfied they are with their lives. The Sense of Coherence (SOC) grade received by a patient when assessed is used as a health-promoting resource, which “strengthens resilience and develops a positive subjective state of health” (Eriksson et al. 2006). This may be used in hospitals or by healthcare professionals to gain a better understanding of their patients’ perspectives and, in turn, provide the type of care most suited for their needs.
Patient care goes far beyond the treatment of microscopic cells. It is only once healthcare professionals assess a patient based on their cultural, ethical, and moral backgrounds that they can create the highest standard and quality of life for each person.
Reference(s):
Anne, Fadiman. The Spirit Catches You, and You Fall Down. 1997.
“Epilepsy Foundation.” Epilepsy Foundation, https://www.epilepsy.com/.
Eriksson, Monica, and Bengt Lindström. “Antonovsky’s Sense of Coherence Scale and the Relation with Health: A Systematic Review.” Journal of Epidemiology and Community Health, vol. 60, no. 5, May 2006, pp. 376–81. PubMed Central, doi:10.1136/jech.2005.041616.
Eriksson, Monica, and Maurice B. Mittelmark. “The Sense of Coherence and Its Measurement.” The Handbook of Salutogenesis, edited by Maurice B. Mittelmark et al., Springer, 2017. PubMed, http://www.ncbi.nlm.nih.gov/books/NBK435830/.
“Safe.” CCC New York, https://cccnewyork.org/safe/.