Making Sense of Prognosis Communication in Heart Failure Using a CAS Framework

1. 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

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. DemersDr 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), 635-640. • 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), 108-117. doi: 10.4236/wjcd.2013.31A017 Plexus Nursing Network

17. Questions / Contact Information Patricia H. Strachan RN PhDAssociate Professor McMaster University School of Nursing Hamilton, ON, Canada strachan@mcmaster.ca Plexus Nursing Network