Negotiating Uncertainty: Advance care planning in advanced chronic obstructive pulmonary disease (COPD)

Abstract

Physical and psychosocial symptoms in advanced chronic obstructive pulmonary disease (COPD) are cumulative and profound; global financial and human costs are huge. COPD in late stages runs an unpredictable downward course of increasing, potentially fatal exacerbations. Nevertheless many physicians avoid advance care planning in this context, a choice that tends to promote last minute crisis decision-making. To explore a more ethically sound proactive approach to end-of-life care decision-making I conducted a qualitative study informed by the question: “What is required for meaningful and effective advance care planning in the context of advanced COPD?” Fifteen participants (eight patients with advanced COPD plus seven intimate others) participated in two in-home advance care planning discussions that incorporated patient-centred care principles. Session transcripts were analyzed using "interpretive description." Despite initial wariness, participants were able to discuss their care-related hopes and preferences and reported that the process was a positive one. Interpretation of the positive feedback suggested participants experienced the process as a chance to: a) talk with an attentive clinician, b) learn, c) consider care-related goals and preferences, and, d) have intimate others hear about these goals/preferences. Interpretation of the process that led to this positive assessment is described in terms of a thematic network. The overarching global theme of this network was "advance care planning as collaborative care," which involved three organizing themes--partnering, negotiating ambiguity, and being a resource--and a cluster of basic themes related to each of these. The "collaborative care" approach is discussed as a guide to advance care planning in advanced COPD. Like other advance care planning models, the study approach included a skilled clinician facilitator, provision of targeted information, and attention to readiness. There were four new elements: focus on caring, engaging hope, facilitator reflective praxis, and contextual sensitivity. While potentially enhancing the "care" dimension in advance care planning, the study approach may incidentally improve resource allocation and satisfaction with outcomes. Done well it may enhance decision-making and care planning, and, just as importantly, be experienced as care itself at a time and by those often neglected in this regard.