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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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Ethics of the Ordinary

Andrew Papanikitas* is deputy editor of the BJGP. He is on twitter @gentlemedic
Peter Toon is a retired GP writer and virtue ethicist
Paquita De Zulueta, is Hon. senior lecturer in medical ethics and law at Imperial College and recently retired GP. She is on twitter @PdeZ_doc
David Misselbrook is senior ethics advisor for the BJGP
John Spicer* is a South London GP, ethicist and medical educator. He is on twitter @johnspicer3
This week’s BJGP Life articles (see bottom of article for what is coming up) will have an ethical or philosophical flavour, as BJGP Life launches a new column: Ethics of the ordinary (EotO) is a regular column that explores ‘ethical and moral concerns relevant to general practice and primary care.’

…so much general practice… involves moral complexity.

There are many reasons why primary care generates ethical and philosophical issues. Patients are likely to be meaningfully autonomous -fully clothed and fully conscious, more empowered to contest medical ideas of best interests and risk.1 Primary care teams look after entire families, and generally do not discharge patients who choose not to comply with their recommendations. They can be left to look after patients deemed ‘untreatable’ by secondary care services.2 They often have a holistic understanding of patients’ backgrounds, life stories and values acquired from longer term relationships built on trust and familiarity. And there is just so much general practice happening out there that involves moral complexity. A patient attends during a full surgery, distraught over a marital breakdown – how much time should you give them? Can this teenager be in a consensual relationship with their few-years-older partner? Should we be motivated by compassion or duty? Should we delay the initial COVID-19 vaccination programme because of possible risks? The issues are as endless and everyday as general practice itself. And it is a poorly kept secret that ethics teaching in undergraduate and postgraduate medical education is often delivered by general practitioners.3
Some cases involve much discussed ‘ethical dilemmas,” such as those concerning abortion or end of life care, or arise from societal or technological changes such as assisted fertility or advances in genomic medicine. But many raise everyday and ordinary issues which are ‘unsexy‘4 from a popular or academic perspective because they are not associated with a new technology, a change in the law or a moral panic. Dramatic and technology-driven ethical issues also clearly affect community and primary care settings. Issues and conflict may also arise in the interface between teams, whether they are located in hospitals or community settings.5
The ethics of the ordinary is a reference to the of issues and decisions found in everyday practice.6,7,8 It may be that the public interest, or academic funding, or political gaze, have moved on. It may be that that undramatic instances still raise moral questions worth answering. EotO relates to all healthcare settings (not just general practice and not just those which are patient-facing).

We called for a body of knowledge and community of scholars to support primary healthcare…

EOTO has also been embodied as a mundane revolution in UK primary care, by groups of British GPs and allied academics in a variety of disciplines. Admiring the relative success of clinical ethics committees in hospitals and national groups9 like the Genethics Forum and the UK Clinical Ethics Network, some set up discussion groups,10 others contacted their local hospital ethics committee with their dilemmas.11 We called for a body of knowledge and community of scholars to support primary healthcare12,13 and ran a series of conferences at the Royal Society of Medicine over a decade, with support from the Institute of Medical Ethics, The University of Oxford and the RCGP.14,15 A large group of us wrote an award-winning handbook of primary care ethics,16 cited in the RCGP curriculum. The BJGP ran an A-Z of medical philosophy – explicitly inviting readers to use the ideas in reflecting on their own professional lives.17 During this period the RCGP committee on medical ethics has been a presence at the RCGP annual conference, running sessions on (inter alia): shared decision-making, part-time working, sponsorship, guidelines and conflicts of interests as well as tackling artificial intelligence and genomic medicine in primary care.18
The references below represent the range and evolution of issues raised, and a collegial community which is far from homogenous in world view and intellectual tradition. You will see familiar authors from past and present, and we invite the wider BJGP and BJGP life community to join us in this discourse. We will include both solicited and reasonably argued unsolicited work in the EotO column. EotO will not shy away from controversial or divisive topics, and collegial discussion in the comments is encouraged. Please ensure that debate is respectful, and founded on reasonable arguments and facts.
What to expect the week commencing 14th February 2022 on BJGP Life:

On Wednesday, Felicitas Selter, Kirsten Persson, and Gerald Neitzke discuss the similarities and differences in animal and human euthanasia as a source of moral distress for the practitioner.
On Thursday, Helen Burn explains that because legalised physician-assisted dying would likely involve GPs, GPs should think about their views on the issue.
On Friday, Matthew Davis and Ana Worthington argue that the arguments in favour of the recent Assisted Dying Bill at its second reading in the UK House of Lords are based on flawed evidence.
On Saturday, Koki Kato introduces us to phenomenology as an approach to understanding patient-centred care, using his own illness-experience as a worked example.
On Sunday Samar Razaq reflects on truth, medical opinion and the scholarship in the age of Twitter.

All this week’s BJGP Life articles have been recently independently submitted (none were commissioned). We hope that they generate discussion and collegial debate.
References
1. Brody H. The essence of primary care, p. 56-61 in The Healer’s Power. New Haven: Yale University Press. 1992
2. Pellegrino E. The healing relationship: the architronics of clinical medicine, in Shelp EA, ed. The clinical encounters: the moral fabric of the patient-physician relationship. Reidel, Dordrecht 1983
3. Misselbrook D (2012) The BJGP is open for ethics. Br J Gen Pract, DOI: https://doi.org/10.3399/bjgp12X629964
4. Butcher F (2011), The appeal of ‘unsexy’ ethics, https://wellcome755.rssing.com/chan-8434298/latest-article2.php (accessed 12/2/22)
5. Wiles K et al, Ethics in the interface between multidisciplinary teams: a narrative in stages for inter-professional education, London J Prim Care (Abingdon). 2016; 8(6): 100–104. doi: 10.1080/17571472.2016.1244892
6. Papanikitas A and Toon P, Last but not least: the ethics of the ordinary, Br J Gen Pract, 2010; 60 (580): 863-864. https://bjgp.org/content/60/580/863.full
7. Cyril et al, Ethics of the ordinary: a class response, Br J Gen Pract, 2012; 62 (595): e143-e146. DOI: https://doi.org/10.3399/bjgp12X625283
8. Gardner J et al, Emerging themes in the everyday ethics of primary care, Clinical Ethics 2011; 6 (4):211-214 doi: https://doi.org/10.1258/ce.2011.011034
9. Peile E. Supporting primary care with ethics advice and education, BMJ, 2001; 323(7303): 3–4. doi: 10.1136/bmj.323.7303.3
10. Evans Patel G, King A, and Spicer J, Healthcare ethics: learning in the workplace, Work Based Learning in Primary Care 2006; 4: 57–64 https://www.researchgate.net/publication/321318915_Healthcare_ethics_Learning_in_the_workplace accessed 12/2/22
11. Sokol D (2009), Who wants to be the flu GP? http://news.bbc.co.uk/1/hi/health/8135658.stm (accessed 12/2/22)
12. Papanikitas A, Toon P. Primary care ethics: a body of literature and a community of scholars? Journal of the Royal Society of Medicine. 2011;104(3):94-96. doi: https://doi.org/10.1258/jrsm.2010.100353
13. De Zulueta P. (2008) Welcome to the ethics section of the London Journal of Primary Care London Journal of Primary Care, doi: https://doi.org/10.1080/17571472.2008.11493183
14. Papanikitas A, et al. (2011) Ethics of the ordinary: a meeting run by the Royal Society of Medicine with the Royal College of General Practitioners. London Journal of Primary Care, doi: https://doi.org/10.1080/17571472.2011.11493331
15. Papanikitas A et al, 4th annual primary care ethics conference: ethics education and lifelong learning London J Prim Care (Abingdon). 2014; 6(6): 164–168. doi: https://doi.org/10.1080/17571472.2014.11494369
16. Jewell D, Brave new ethics, Br J Gen Pract 2019; 69 (681): 200. doi: https://doi.org/10.3399/bjgp19X702053
17. Misselbrook D (2013) An A-Z of medical philosophy. Br J Gen Pract, doi: https://doi.org/10.3399/bjgp13X660841
18. Papanikitas A. (2016) Education and debate: a manifesto for ethics and values at annual healthcare conferences. London Journal of Primary Care 8:6, pages 96-99. https://doi.org/10.1080/17571472.2016.1244152
Featured image: From the classroom to the clinic, by Andrew Papanikitas

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