Negotiating Uncertainty: Advance Care Planning in Advanced Chronic Obstructive Pulmonary Disease (COPD)

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

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