Patient perceptions of severe COPD and transitions towards death: a qualitative study identifying milestones and developing key opportunities

Abstract

Background:Chronic obstructive pulmonary disease (COPD) is a slowly disabling illness, with functional limitations and a high burden of symptoms. Palliative care services focus on quality of life for those facing life-limiting illness. Patients with COPD often see their illness as a ‘way of life’, not as a life-threatening illness, which makes the interface difficult.Aims:The aim of this study was to explore the experience of patients with advanced COPD after a life-threatening event, particularly focusing on end-of-life issues.Methods:Qualitative methods were used to capture patient experiences. Patients admitted for noninvasive ventilation for COPD were recruited and interviewed in their homes following discharge. The interview schedule explored the participants' understanding of their illness, concerns and plans, exploring end-of-life issues and perceptions of palliative care.Results:Participants were recruited until themes were saturated. Six transition points or milestones emerged: loss of recreation, home environment, episodes of acute care, long-term oxygen treatment, panic attacks, and assistance with self-care were common themes throughout the narratives.Conclusions:Milestones accumulate in no particular order. They can be easily recognised and allow health professionals to develop a common language with their patients. In advancing COPD, milestones may trigger the reassessment of goals of care and integration of a palliative approach.

Experiences of older people following an acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study

“…The exacerbation event in COPD could be a clear example of the “milestones” in COPD described by Landers et al. () where a conversation about end‐of‐life care could be initiated. Indeed, in other life‐limiting illnesses, there are points where a discussion about palliative care should begin (Epiphaniou et al., ) and COPD nurses could possibly learn from cancer care for example, developing skills to communicate sensitively with patients about end‐of‐life issues, helping families prepare for bereavement and enhancing their skills in relation to palliative care matters such as symptom control and pain relief.…”

“…This is certainly advocated by Landers et al. () who stress the importance of open discussions with people about their COPD prognosis. Third, COPD nurses should also recognise when strategies to develop physical and emotional coping mechanisms, such as CBT‐related stress management techniques and practical help from occupational therapy could be used to develop confidence and self‐reliance.…”

“…Similarly, Landers et al (2015) argue that people with COPD do not What does this paper contribute to the wider global clinical community?…”

“…Similarly, Landers et al. () argue that people with COPD do not always have discussions with their care providers about the worsening of their illness and that certain events, like an acute exacerbation, can serve as times when healthcare professionals should introduce end‐of‐life care discussions. However, this can be a problematic issue for healthcare professionals as acute exacerbations of COPD are not wholly predictive of long‐term prognosis—and identifying the right time to introduce a more palliative approach is a difficult clinical decision (Gott et al., ; Reinke et al., ).…”

“…This change in lung condition is usually secondary to long-term exposure to pathogens such as tobacco smoke or other chemicals that damage lung tissue-this process then leads to frequent episodes of shortness of breath and poor oxygenation of tissues and organs. In certain circumstances, this can lead to an acute admission to hospital (Barnett, 2005;Kessler et al, 2011;Landers, Wiseman, Pitama, & Beckert, 2015). It is also the case that hospital admission rates increase as the disease worsens (Andersson, Svensson, & Gerhardsson de Verdier, 2006;Giacomini, DeJean, Simeonov, & Smith, 2012).…”