Seeing the person, not the disease: a holistic approach to lung disease.

2026: ERS Barcelona

ERS klinisk praksis

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On the congress theme, patient centricity, patients and healthcare professionals shared perspectives on what holistic care looks like in the session “Holistic approaches in lung disease: addressing physical, emotional and social factors”,.a reocurring message was that seeing the person behind the disease and understanding how respiratory symptoms affect everyday life is a key element for holistic care, and should be integrated into the respiratory care from start. One basic skill was called for repeatedly – guess which?

Two patient perspectives on living with lung disease

How can we move from treating lung into taking care of the whole person? This was discussed by a multidisciplinary panel. Tom Bermingham, who lives with chronic lung disease, opened the discussion by reminding us that what starts as a physical lung problem gradually develops into an emotional and social challenge.

Eleni Stamouli, who lives with pulmonary fibrosis, asked a simple but important question: when you look at a patient with lung disease, do you see damaged lungs, or do you see a person whose daily life is affected by the disease? Her main ask was clear: see the person, not the disease. Lung disease can affect how a person moves, sleeps, works and interacts with family and friends, as well as their independence and sense of self.

Fear of breathlessness limits life

Breathlessness was used as an example of how closely physical and emotional symptoms are linked. Fear of becoming breathless can result in patients avoiding exercise and everyday activities. Inactivity then leads to deconditioning, which may make breathlessness even worse, creating a vicious circle. Mental and emotional well-being, Stamouli emphasised, should not be separated from the treatment of lung disease.

Understand where the struggles are

Eleni’s key message was that holistic care starts with something very basic: listening. Questions such as “What worries you the most?” or “How does your disease affect your daily life?” may reveal things that a CT scan, lung function test or blood test cannot tell you.

Impact on disease trajectory

Clinical psychologist Ingeborg Farver-Vestergaard pointed out that it is not only important to know what disease a person has, but also what person has the disease. Patients with similar clinical characteristics may experience and respond to their disease very differently. Psychosocial factors are therefore important, not only for maintaining quality of life, but could affect treatment adherence, exacerbation risk and prognosis.

Psychosocial problems may occur much earlier in the disease trajectory than we sometimes assume. Waiting to address mental health until their disease have progressed in severity is not good enough, Faver Vestgaard stressed that psychosocial care needs to be integrated from start.

Moving on to physical activity, clinical exercise physiologist Ciara McCormack described exercise as another important part of holistic care. She pointed out that the goal is not simply to improve physical fitness, but to enable patients to maintain independence and continue doing things that are meaningful to them. Fear of exercise and breathlessness is common, and patients may be uncertain about what is safe and what to do on bad days. The advice to “be more active” is not very helpful. McCormack called for a move from advice to support. Patients need practical guidance, confidence and access to appropriate exercise support.

What can we do?

The panel was asked to suggest one practical change that could improve holistic care. Farver-Vestergaard proposed using patient-reported outcome measures, including psychosocial factors, as a starting point for conversation rather than simply collecting data. McCormack again highlighted the need to move from advice to active support, while Stamouli emphasised that holistic care must become the standard rather than the exception.

Overall, the panel left us with a very clear message: chronic lung disease is about much more than the lungs. Holistic care means understanding the impact on life the disease has for an individual patient, what matters most to them and what support they need. And perhaps the simplest place to start is to apply one basic skill: to listen.

24584-10.09.2026