Abstract
Context
Despite the recent promotion of communication guides to improve decision making with patients nearing the end of their lives, these conversations remain challenging. Deeper and more comprehensive understanding of communication barriers that undermine discussions and decisions with patients at risk of dying from heart failure (HF) is vital for informing communication in health care.
Objectives
To explore experiences and perspectives of patients with advanced HF, their caregivers, and providers, regarding conversations for patients at risk of dying from HF.
Methods
Following Research Ethics Board approval, index patients with advanced HF (New York Heart Association III or IV) and consenting patient-identified care team members were interviewed. A team sampling unit was formed when the patient plus at least two additional team members participated in interviews. Team members included health professionals (e.g., cardiologist, family physician, HF nurse practitioner, social worker, and specialists, such as respirologist, nephrologist, palliative care physician), family caregivers (e.g., daughter, spouse, roommate, close friend), and community members (e.g., minister, neighbor, regular taxi driver). Our data set included 209 individual interviews clustered into 50 team sampling units at five sites from three Canadian provinces. Key informants, identified as practicing experts in the field, reviewed our initial findings with attention to relevance to practice as a form of triangulation. Iterative data collection and analysis followed constructivist grounded theory procedures with sensitizing concepts drawn from complexity theory. To ensure confidentiality, all participants were given a pseudonym.
Results
Participants' reports of their perceptions and experiences of conversations related to death and dying suggested two main dimensions of such conversations: instrumental and existential. Instrumental dimensions included how these conversations were planned and operationalized as well as the triggers and barriers to these discussions. Existential dimensions of these conversations included evasive maneuvers, powerful emotions, and the phenomenon of death without dying. Existential dimensions appeared to have a basis in issues of mortality and could strongly influence conversations related to death and dying.
Conclusion
Conversations for patients at risk of dying from HF have both instrumental and existential dimensions, in which routines and relationships are inseparable. Our current focus on the instrumental aspects of these conversations is necessary but insufficient. The existential dimensions of conversations related to death are profound and may explain why these conversations have struggled to achieve their desired effect. To improve this communication, we need to also attend to existential dimensions, particularly in terms of their impact on the occurrence of these conversations, the nature of relationships and responses within these conversations, and the fluidity of meaning within these conversations.
