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How can we understand illness? Phenomenology and the pillar of person-centred care

Koki Kato is the director at Madoka Family Clinic, Fukuoka, Japan, and the deputy director at the Academic and Research Centre, Hokkaido Centre for Family Medicine, Hokkaido, Japan. He is on Twitter: @kokikatokk

Introduction: A phenomenology of illness

Understanding illness, defined as “a feeling, an experience of unhealth which is entirely personal, interior to the person of the patient”,1 is a central task of a physician’s life.2 McWhinney’s principles of family medicine state, “The family physician attaches importance to the subjective aspects of medicine”,2 which encompasses the understanding of illness and people. Although the understanding illness is an essential task for family physicians, achieving it is challenging. The reason is that illness is a first-person experience, only available to the patient concerned.

The key to closely approaching a patient’s illness is empathy. Edith Stein, a German philosopher, described that empathy “allows me to see or understand the inner life of another and the body of the other as both other and similar to my body”.To understand illness with empathy, there is a helpful reflective mode, phenomenology. Phenomenology itself has been developed by various philosophers such as Husserl, Heidegger, Sartre, and Merleau-Ponty.4 Among recent phenomenologists, Toombs and Carel have elaborated especially on the phenomenology of illness. Havi Carel, a professor of philosophy at the University of Bristol, explores what patients experience in illness using phenomenological analysis in her book, Phenomenology of Illness. She introduces phenomenology as “a method for examining pre-reflective, subjective human experience as it is lived prior to its theorisation by science”, and it “enables us to direct our attention towards others in thoughtful empathy.”5

To understand illness with empathy, there is a helpful reflective mode,

phenomenology

This idea is not familiar to us because we are deeply immersed in the world of ontology. Ontology  is the study of ‘being,’ and can be a way of thinking that there are invariants in reality.6 Most evidence in medicine, especially quantitative, has been founded on ontological grounds. For example, in the view of the ontological thinker, the effect of a drug must be universal when all other conditions are the same. While ontology is a study of being, phenomenology is a study of experience.4 Phenomenology, together with medical anthropology, sociology, psychology, and qualitative research, is vital to reaching a comprehensive understanding of the experience of illness.5

Illness experience and reflective learning

I experienced minor illness, calf pain. I reflected on this experience using Carel’s book as a guide and gained meaningful insights that help me better understand a patient’s illness.

Illness: Calf pain

I enjoy a five-kilometre run in the morning. One day, I felt pain in my left calf when running. At first, it was so vague, and I continued to run. However, the pain gradually grew, and finally, I had to quit running. After that, the pain hit me when I even walked for several days, and I felt the commute to work seemed endlessly far away. Running had been my irreplaceable pleasure. However, the pain disrupted my life with enjoyment. I felt as if such a life was no longer guaranteed in the future.

One week after the event, the pain had almost disappeared. I started running carefully at a gentle pace. I felt subtle discomfort in my left calf. While I was running, I was nervous about the sensation in my left calf. I felt profound fear every time I took the next step anticipating relapse of pain. I had continued to doubt the competence and wholeness of my leg.

At last, I could complete a five-kilometre run without pain. This accomplishment allowed me to regain some confidence. I ran slightly faster the next day, but I did not feel pain. I thought that I was getting back to my usual self with wholeness.

Reflective Learning: Calf pain

Bodily Doubt: Phenomenology can shed light on our unaware embodied existence. Carel argued that we have a tacit certainty about our bodies, which are unrecognized in daily life except for we experience its breakdown in illness, called bodily doubt.5 Bodily doubt disrupts our normal experience of bodily continuity, transparency, and trust. From the occurrence of the calf pain, the continuity of my body, which I had experienced implicitly, was interrupted. I needed to pay explicit attention to my body and physical activities; my body was once transparent (i.e., not the thematic object of experience), as Sartre described,7 but it was not after that. Even after continuity is restored, the possibility of doubt persists and contaminates the future experience. It consistently reminds us of “the contingency and fallibility of the original continuity”.5 It seems that a similar experience can be seen in cancer survivors.8 Although cancer is removed, the possibility of doubt does not disappear, and the patients have to live in fear of recurrence.

Pursuing Purposes: I lost my trust in the body, which is the basis of my everyday purposeful actions. Illness interferes with my pursuing purposes. For me, running has been an irreplaceable joy and one of my purposes in everyday life. Cassell argues that people need to function well enough to pursue their purposes and goals to have a sense of well-being.9Furthermore, he stated: “The basic aim of healers must be the enabling or return of function so that patients may pursue or achieve their purposes and goals.”9 In response to these, many consultation models that focus on person-centredness indicates function,10 effect on life,11 and aspirations and purpose in patients’ lives10 to be explored.

The loss of shareable experience with other people deepens an ill person’s sense of loss.

Loss of the Familiar World: I experienced the loss of wholeness, bodily doubt, the inability to walk as usual, and the feeling of long distances to commute. Toombs describes the five essential features of illness: loss of wholeness, loss of certainty, loss of control, loss of freedom to act, and loss of the familiar world.12 I realized that I indeed experienced all of those features. Of these, loss of the familiar world needs special mention. Illness prevents us from continuing usual activities, including social participation. The loss of shareable experience with other people deepens an ill person’s sense of loss. Furthermore, once established plans according to the familiar world have to be adjusted in light of the ill person’s new world. This kind of loss and adjustments can occur in stroke survivors.13 They suffer the loss of the familiar world, adjustments of future plans, and participation restrictions.

Illness: Wrist Injury

Another illness that I recently experienced was a left wrist injury. I got this injury when I climbed a chair and fell from there trying to change a light bulb in the living room. Immediately after the injury, my left wrist started aching and swollen. I took radiography of the wrist repeatedly after a period, but there was no evidence of fracture. So, I continued my daily life without bandaging or immobilizing the wrist. I felt pain, but nobody cared for me because I had not shown a sign anywhere that said: “I am sick”.
Furthermore, this injury prohibited me from pursuing my daily routine, handstand push-up. My body suddenly changed to one that could not perform the training routine. I felt that the injury diminished my value as if I would never be able to do it again. Several weeks later, my wrist still hurts after strenuous exercise. However, finally, I found a way to train myself. Push-up bars allow me to perform handstand push-up without feeling too much pain in the wrist. My wrist is not fully repaired, but now I can pursue my routine. Although I have an illness, I feel well-being.

Reflective Learning: Wrist injury

Illness as First-Person Experience: We cannot understand whether a particular person has an illness from the outside. Thus, as many person-centred consultation models suggest,10,11 we need to ask patients what they experience, even if they do not appear to have illnesses.

Well-Being in Illness: Although bodily continuity is disrupted, we can still pursue our purposes through various adjustments. In that case, we can reorganise our well-being. Sometimes, this process occurs reactively without reflection, as in my case. However, on the other hand, illness also can be seen as changing the ways of being. For an ill person, the future is full of uncertainty. To overcome this fear of uncertainty, we need to reevaluate time as something not to take for granted but to cherish. McWhinney quotes a long-term survivor of metastatic osteogenic sarcoma, “Hope for the present moment is the capacity for living in the moment by developing the practice of mindfulness.”2 This kind of philosophical reflection could occur in patients taking palliative care. I remember several patients who I cared for experiencing such spiritual realisation.

Conclusion: phenomenology in family medicine

Although my illnesses were transient and minor, the experience and the reflection provided me with a foundation for understanding patients’ persistent and profound illnesses. Just as we cannot diagnose diseases without knowing about clinical reasoning and diseases, we cannot understand each patient’s illness without knowing about person-centred care and general aspects of illness. Although illness is an entirely individual experience, phenomenology can facilitate our understanding of the shared aspects of the human experience of illness. Carel stated: “The purpose of abstraction is to understand that world and then return to it with new sensibilities.”5 Therefore, understanding the general aspects of illness can cultivate our creative capacity of empathy toward patients. It would further enhance the patient-clinician relationship, the most therapeutic aspect of family medicine.10

 

References

1. Marinker M. Why make people patients?. J Med Ethics. 1975;1(2):81-84. doi:10.1136/jme.1.2.81
2. McWhinney IR, Freeman T. Textbook of Family Medicine. 3rd ed. Oxford: Oxford University Press; 2009.
3. Calcagno A. Chapter 4. Empathy as a feminine structure of phenomenological consciousness. In: Calcagno A. The Philosophy of Edith Stein. 1st ed. Pittsburgh, PA: Duquesne University Press; 2007: 63-79.
4. Phenomenology. Stanford encyclopedia of philosophy. Updated December 16, 2013. Available at: https://plato.stanford.edu/entries/phenomenology/. Accessed December 7, 2021.
5. Carel H. Phenomenology of Illness. Oxford: Oxford University Press; 2018.
6. Bodenreider O, Smith B, Burgun A. The Ontology-Epistemology Divide: A Case Study in Medical Terminology. Form Ontol Inf Syst. 2004;2004:185-195.
7. Sartre JP. Being and Nothingness. London: Routledge; 2003.
8. Shapiro CL. Cancer Survivorship. N Engl J Med. 2018;379(25):2438-2450. doi:10.1056/NEJMra1712502
9. Cassell EJ. The Nature of Healing: The Modern Practice of Medicine. Oxford: Oxford University Press; 2012.
10. Stewart M, Brown J, Weston W, McWhinney IR, McWilliam C, Freeman T. Patient-Centered Medicine: Transforming the Clinical Method. 3rd ed. London: CRC Press; 2014.
11. Kurtz SM, Silverman JD. The Calgary-Cambridge Referenced Observation Guides: an aid to defining the curriculum and organizing the teaching in communication training programmes. Med Educ. 1996;30(2):83-89. doi:10.1111/j.1365-2923.1996.tb00724.x
12. Toombs SK. The meaning of illness: a phenomenological approach to the patient-physician relationship. J Med Philos. 1987;12(3):219-240. doi:10.1093/jmp/12.3.219
13. Skolarus LE, Burke JF, Brown DL, Freedman VA. Understanding stroke survivorship: expanding the concept of poststroke disability. Stroke. 2014;45(1):224-230. doi:10.1161/STROKEAHA.113.002874

Featured image by by Bruno Nascimento on Unsplash

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