On the occasion of World Inflammatory Bowel Disease (IBD) Day we spoke with Fergus Shanahan, who is Professor and Chair of the Department of Medicine at University College Cork (UCC), Ireland. He was the Director of APC Microbiome Ireland from its foundation as the Alimentary Pharmabiotic Centre in 2003 until May 2019.
Furthermore, he has published the books “Fast Facts: Inflammatory Bowel Disease” (for health care professionals; together with David S. Rampton) as well as “Fast Facts for Patients and Their Supporters: Inflammatory Bowel Disease” with Karger. Both resources are freely available online.
Dear Professor Shanahan, May 19 is World IBD Day. Why is this awareness day so important?
In general, one might be forgiven for feeling saturated, weary or wary of awareness campaigns. They are not uniformly successful; nor are they always desirable. Some are counterproductive, particularly if words are not matched with deeds. However, I believe it is timely and appropriate to remind policy makers and health service managers of the needs of people with non-Covid disease, such as inflammatory bowel disease (IBD). Covid restrictions have been particularly hard on adolescents and young adults – the same age cohort most affected by chronic inflammatory disorders, such as IBD.
Awareness of their plight is particularly important now because Covid has become a convenient excuse for poor health service to non-Covid patients. No one disputed the need to cancel elective surgery to conserve hospital resources during the Covid crisis. But ‘elective’ does not mean ‘non-essential’ or ‘unnecessary’. The fickle nature of words is seldom appreciated by decision-makers distant from the front line, but it is critical to the welfare of non-Covid patients, particularly those with IBD. Patients with IBD have critical requirements which may be categorized as elective, but which are essential. Lack of awareness or attention to this urgency on the part of service managers and policy makers may jeopardize the health of many patients.
Could you please tell us about current and possible future approaches in treating inflammatory bowel disease?
I am an optimist in relation to the treatment of inflammatory bowel disease. One may be confident that the science of medicine will continue to advance. One can also project the increasing use of personalized strategies tailored for the individual needs of patients. Moreover, greater precision is likely as medical science begins to address the interaction of host genetic susceptibility (human genome) with the microbiome (the host’s other genome). I anticipate that the focus of research will shift toward risk prediction and prevention. In that regard, the most striking epidemiological fact concerning the occurrence of inflammatory bowel disease is its emergence as societies undergo socio-economic development.
In my view, we owe it to the developing world to try to prevent the emergence of Crohn’s disease and ulcerative colitis in such areas of the globe as they undergo modernization. Lessons learned in the developed world should be applied to disease prevention in the developing world. Greater attention must be paid to diet and other lifestyle factors that increase the risk of inflammatory bowel and other chronic inflammatory disorders, by modifying the microbiome. This much we can be confident of. Sadly, while the science of medicine will continue at pace, it seems less likely but equally desirable that the humanity of health services will progress at the same rate.
What impact has the current Covid-19 pandemic made on your work and on the lives of your patients?
In my view, patients with non-Covid disease have borne the greatest burden during the pandemic. This has led to delayed diagnosis and sub-optimal care. This has not, of course, been restricted to IBD; it has applied to all acute and chronic medical disorders. The medical profession and health services have tried to respond and mitigate the situation with virtual remote or telemedical consultation. Much can be achieved by use of virtual consultations and it is probable that this technology will continue post-Covid.
However, it is clearly suboptimal in many circumstances. Elderly patients have difficulty with virtual and digital devices for communication and may stay away. Others find it difficult to explore sensitive issues with their doctor that they would otherwise have divulged in a face-to-face consultation. Likewise, virtual communication places the clinician at disadvantage when unable to perform a physical examination and observe critical non-verbal communication cues and other signals from their patients.
What does patient centricity and empowerment mean for your daily work and your relationship with your patients?
There are numerous asymmetries in a patient-doctor interaction which I discuss in my book on “The Language of Illness”, published by Liberties Press, Dublin, in 2020. The most obvious of these is the fact that the consultation is often a crisis for the patient, while routine for the doctor. Knowledge was once another source of asymmetry but no longer. Patients can now acquire knowledge from more accessible sources; instead, they rely on their doctor for wisdom, perspective, advocacy, and guidance.
Sadly, language is a neglected source of asymmetry. Language should connect patients with their doctors, not separate them. The most elementary step in empowering a patient is to use a common language. Too often, doctors use disease-speak whereas patients speak in terms of illness; illness being the lived experience of disease. Patient centricity is impossible if the patient feels that he/she speaks a language that differs from that of their doctor.
In the blurb of your book ‘The Language of Illness’ you are quoted as being ‘enough of an expert to be wary of experts’. Could you explain what you mean by this?
My book “The Language of Illness” deals with many aspects of the inadequacy of medical language in addressing illness – the lived experience of disease. For me, an expert has achieved a commanding understanding of his/her field such that they can explain it in clear language to everyone. However, true experts also have sufficient understanding to be aware of how much and how little they know. A true expert will frequently say: “I don’t know”.
I believe that knowledge may come with arrogance whereas true expertise is more often accompanied by humility. My wariness relates to the distinction between true experts and presumed experts. The distinction is important when the stakes are high, such as for patients with significant illness. My advice to people seeking a suitable doctor to manage chronic illness is always the same: choose a doctor who is interested in you and your condition and who is sufficiently knowledgeable to admit what he/she does not know.
Many thanks for your participation!