Thoughts on the end of life in patients with oxygen‐dependent chronic obstructive pulmonary disease: A qualitative interview study

Abstract

Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of morbidity and mortality worldwide (Bousquet et al., 2007; Global Initiative for Chronic Obstructive Lung Disease, 2022).COPD is an often progressive and complex illness characterized by chronic airflow limitation, systemic manifestations, and a high burden of comorbidity (GOLD, 2022). The main treatment target in COPD is relief of symptoms, including fatigue, cough, and breathlessness (Barnett, 2005;Vogelmeier et al., 2020). The symptom that patients often experience as most troublesome and limiting is breathlessness (Bowden et al., 2011;Sandberg et al., 2019). COPD is likely to progress over several years and include sudden exacerbations, making the disease unpredictable due to experiences of both good and bad days. Respiratory symptoms may vary in severity over hours, days, and weeks, but are generally worse in the mornings (Miravitlles et al., 2017). Good days are experienced when the breathing is easier, followed by bad days with severe breathlessness. This leads to patients living with uncertainty until the time of death, suffering periods of unpredictable exacerbations with uncertain outcomes (Ek et al., 2015).Patients with advanced COPD may develop chronic severe hypoxemia, requiring long-term oxygen-therapy (LTOT) (Hardinge et al., 2015;Jacobs et al., 2020). Although LTOT improves survival in chronic severe hypoxemia, patients with LTOT still have a high mortality rate, with a median survival time after starting the treat-

COPD-Related Anxiety: A Systematic Review of Patient Perspectives

“…Breathlessness was a central part of all patients’ experiences and was identified as the most troublesome symptom of COPD. 22 , 23 , 25 , 26 , 29 , 30 , 55 Metaphors used to describe breathlessness, eg, fear of breathlessness, were compared to fighting a war without weapons 30 and as an iron ring across the chest. 26 Breathlessness was experienced as an attack, feeling of suffocation, shortness of breath, lack of air, and smothering.…”

“…Being breathless and running out of oxygen without access to help led to feelings of fear and panic. 19 , 22 , 25 , 38 , 41 , 44 Patients, who had never experienced episodes of severe breathlessness, still felt anxiety and fearful, imagining future episodes of breathlessness. 11 , 30 , 34 , 38 , 49 , 57 Patients were affected by the COPD diagnosis and prognosis and the realization that they had to live with COPD for the rest of their lives.…”

“…These thoughts initiated worry and fear of the future. 22 Patients used metaphors such as fear of ending their days as a vegetable, fading away slowly, or being pronounced dead prematurely and buried alive. 43 The inner processing was described as fear of the process of dying; the long struggle of breathlessness, struggling for air, and painful suffocation.…”

“…This self-other-awareness gave a feeling of being vulnerable, as it increased feelings of anxiety due to the imagination that their self-efficacy slowly would decrease as COPD progressed. 22 , 36 , 52 …”

“…Patients feared or dreaded not being able to speak to others or call for help during an exacerbation, especially during the night. 22 When feeling a small change in the quality of breathing or during the first signs of an exacerbation, patients would seek hospital intervention instead of relying on self-management or coping. 33 , 35 , 41 …”