Commentary on Barnett M (2005) Chronic obstructive pulmonary disease: a phenomenological study of patients’ experiences. <i>Journal of Clinical Nursing</i>

Although limited, there is an increasing body of emic knowledge regarding the experiences of individuals living with chronic obstructive pulmonary disease (COPD). As Barnett suggests, much of the work done by nurse-researchers has focused on the overwhelming symptom of dyspnoea (Gift & Cahill 1990, Breslin et al. 1992, Gift 1993, Carriere-Kohlman et al. 1996, Bailey 2004) and the sequelae of fatigue and depression, as well as the impact of this disease process on the quality of life of not only the individual (Duren-Winfield et al. 2000) but the significant others (Low & Gutman 2003). Barnett's phenomenological approach to understanding this chronic illness experience highlights a number of issues that require further research attention from an insider perspective. Barnett minimally addresses the participants’ perception of personal responsibility for illness –‘it's self-inflicted’, a perception related to lung disease and smoking that has received minimal attention in the research literature (O'Neill 2002). Nevertheless, I would suggest that the issue of ‘self blame’/’individual responsibility‘ is complex and impacts not only the individuals’ recognition of their illness and initial minimization of symptoms, but also the services provided by health care providers (PH Bailey, Edinburgh University, Edinburgh, unpublished PhD Thesis). Further, as Barnett indicates, health care providers’ ability to measure and appropriately intervene during episodes of breathlessness with individuals living with COPD has been confounded by the reality that dyspnoea is a subjective experience. That is, although a number of instruments to measure the presence and severity of dyspnea are available (Gift 1989, Gift & Narsavage 1998, Bestall et al. 1999, Kendrick et al. 2000), the level of dyspnoea identified by these objective measures does not necessarily correlate with severity of illness. I would contend, therefore, that it is essential that health care providers attempt to understand episodes of dyspnoea within the context of an individual's usual dyspnoea to provide care more accurately (Bailey et al. 2005). Indeed, through stories about experiences of severe breathlessness during acute exacerbation events (AECOPD), individuals suggest that although they present with anxiety, for them anxiety is often a sign or proxy for worsening breathlessness (Bailey 2004). Based on my work, I would argue that, in the absence of objective measure of illness severity, anxiety might provide an important indicator of acute illness for individuals experiencing acute breathlessness related to COPD. In addition, the phrases used to describe episodes of incapacitating breathlessness by both Barnett and the participants provide only a glimpse of the essence of this overwhelming experience – what Barnett refers to as both feelings of ‘irritability’ and ‘frustration’ and ‘…thoughts of wanting to end their lives…’– suicide ideation. My research with individuals with end-stage COPD during acute illness revealed that they not only think about dying, but often, over the course of their illness, live through ‘near-death’ events. Subsequent to such a watershed experience they live the rest of their lives in ‘the shadow of death’ (Bailey 2001). Finally, my reading of Barnett's work reinforces that in our attempting to understand patients’ experiences, we must recognize that those living with COPD and dyspnea are indeed the experts (Thorne et al. 2003). More specifically, we must ensure that our research inquiry methods adequately capture and effectively communicate the complexity of their experience (Breslin 1992, Paterson et al. 2001).

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