Older patients with late-stage COPD: their illness experiences and involvement in decision-making regarding mechanical ventilation and noninvasive ventilation

Aims and objectives To explore the illness experiences of older patients with late-stage chronic obstructive pulmonary disease and to develop knowledge about how patients perceive their preferences to be taken into account in decision-making processes concerning mechanical ventilation and/or noninvasive ventilation. Background Decisions about whether older patients with late-stage chronic obstructive pulmonary disease will benefit from noninvasive ventilation treatment or whether the time has come for palliative treatment are complicated, both medically and ethically. Knowledge regarding patients' values and preferences concerning ventilation support is crucial yet often lacking. Design Qualitative design with a hermeneutic–phenomenological approach. Methods The data consist of qualitative in-depth interviews with 12 patients from Norway diagnosed with late-stage chronic obstructive pulmonary disease. The data were analysed within the three interpretative contexts described by Kvale and Brinkmann. Results The participants described their lives as fragile and burdensome, frequently interrupted by unpredictable and frightening exacerbations. They lacked information about their diagnosis and prognosis and were often not included in decisions about noninvasive ventilation or mechanical ventilation. Conclusion Findings indicate that these patients are highly vulnerable and have complex needs in terms of nursing care and medical treatment. Moreover, they need access to proactive advanced care planning and an opportunity to discuss their wishes for treatment and care. Relevance to clinical practice To provide competent care for these patients, healthcare personnel must be aware of how patients experience being seriously ill. Advanced care planning and shared decision-making should be initiated alongside the curative treatment