Making Sense of Prognosis Communication in Heart Failure Using a CAS Framework Patricia H. Strachan RN, PhD Associate Professor, McMaster University School of Nursing Robert Robson MDCM, MSc, FRCP(C) Health Care System Safety & Accountability Inc. June 5, 2013

Plexus Nursing Network 2 This presentation is based on a study that was funded by an Operating Grant from the Canadian Institutes of Health Research. Co-Investigators: Dr. H. Arthur & Dr. C. Demers Dr Strachan was supported by a post-doctoral fellowship in Cardiovascular Nursing Research from the Heart and Stroke Foundation of Ontario

Plexus Nursing Network 3 Background HF is a chronic life limiting illness with high morbidity and mortality ++ suffering, ↓quality of life, caregiver demands/burden Emergency admissions; focus: Rx optimization Resources generally inadequate to meet needs as function deteriorates End-of-life (EOL) care/palliative approach is appropriate AND delayed

Plexus Nursing Network 4 Patients with Advanced HF Cross-sectional survey: 5 Canadian centers; hospitalized HF patients ~43% had no plan for emergent care Poor understanding of CPR Concerned re: family burden, support, Poor communication/wanted information Strachan et al 2009

Plexus Nursing Network 5 How can we talk about EOL issues / Advance Care Planning? Patients have a poor understanding of the HF illness and trajectory Initiation of EOL/ACP conversations very challenging Patients ill-equipped to participate actively in life/health decisions that may be affected by their HF Focus has been on finding prognostic indicators Underlying assumption: prognostic certainty is required for EOL/ACP conversations

Plexus Nursing Network 6 Nursing role in EOL/ACP conversations When patients/families do not understand that HF is life-threatening illness, it is challenging for nurses to engage in meaningful conversations re EOL/ACP Those conversations require interpreting the meaning of the illness to their life

Plexus Nursing Network 7 Study purpose What are the preferences of patients with HF and cardiologists for communication about prognosis in the outpatient clinical setting? Assumption: By delineating more clearly the range of preferences it will be easier to engage in meaningful EOL/ACP conversations

Plexus Nursing Network 8 Method Qualitative descriptive study One-to-one semi-structured interviews with 32 out-patients and 9 cardiologists Maximum variation sampling Data analysis as interviews progressed Triangulation Coding, Constant Comparison, Themes Dialectical approach → Consensus

Plexus Nursing Network 9 Findings: Theme 1 Set the stage for prognosis communication Relational aspects Control Transparency HF treatment optimization Patient support available

Plexus Nursing Network 10 Findings: Theme 2 Map the route Intentionality Nature of the prognostic message Hope Coordinated information Delivery style

Plexus Nursing Network 11 Our Path to Complex Adaptive Systems (CAS) It seemed so simple! We did not start out with CAS in mind CAS application emerged through the process of sense-making of the data

Plexus Nursing Network 12 Why the CAS link? Underlying assumptions to the study did not hold up Adding more discrete pieces of the prognosis communication puzzle was not helpful The preferences of the patients and cardiologists reflected eloquently emergent processes that were context-dependent and relational The CAS light bulb went off!

Plexus Nursing Network 13 Characteristics of CAS Co-evolution Relationships are vital Emergence of new patterns Nonlinearity Self-organization Distributed control History co-determines development of the CAS

Plexus Nursing Network 14 Making Sense of the Findings Certainty is not required Preferences are not static Prognosis communication is a relational activity Preferences emerge, are dynamic, evolve in-the- moment & over the course of illness Elements converge in unpredictable ways Adapting prognosis communication (that acknowledges uncertainty) to the context of each patient with advanced HF will create conditions for intentional, meaningful EOL/ACP conversations

Plexus Nursing Network 15 What are the implications? Practitioner skills required to set the stage and map and re-map prognosis communication in an iterative way throughout the trajectory Information flow about elements informing prognosis is essential Understanding HF care as a CAS requires the examination of the roles and interactions of other agents (nurses)

Plexus Nursing Network 16 References Strachan, P.H., Ross, H., Rocker, G.M., Dodek, P.M., Heyland, D.K. for the Canadian Researchers at the End of Life Network (CARENET) (2009). Mind the Gap: Opportunities for Improving End-of-Life Care for Patients with Advanced Heart Failure. The Canadian Journal of Cardiology, 25(11), Strachan, P., Arthur, H., Demers, C. and Robson, R. (2013). The complexity of prognosis communication in heart failure: Patient and cardiologists’ preferences in the outpatient clinical setting. World Journal of Cardiovascular Diseases, 3(1a), doi: /wjcd A017

Plexus Nursing Network 17 Questions / Contact Information Patricia H. Strachan RN PhD Associate Professor McMaster University School of Nursing Hamilton, ON, Canada