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
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
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Background
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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
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Patients with Advanced HF
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Cross-sectional survey: 5 Canadian centers;
hospitalized HF patients
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~43% had no plan for emergent care
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Poor understanding of CPR
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Concerned re: family burden, support,
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Poor communication/wanted information
Strachan et al 2009
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How can we talk about EOL
issues / Advance Care Planning?
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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
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Nursing role in EOL/ACP
conversations
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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
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Those conversations require interpreting the
meaning of the illness to their life
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Study purpose
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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
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Method
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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
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Findings: Theme 1
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Set the stage for prognosis
communication
• Relational aspects
• Control
• Transparency
• HF treatment optimization
• Patient support available
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Findings: Theme 2
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Map the route
• Intentionality
• Nature of the prognostic message
• Hope
• Coordinated information
• Delivery style
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Our Path to Complex Adaptive
Systems (CAS)
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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
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Why the CAS link?
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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!
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Characteristics of CAS
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Co-evolution
Relationships are vital
Emergence of new patterns
Nonlinearity
Self-organization
Distributed control
History co-determines development of the CAS
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Making Sense of the Findings
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Certainty is not required
Preferences are not static
Prognosis communication is a relational activity
Preferences emerge, are dynamic, evolve in-themoment & 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
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What are the implications?
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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)
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References
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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.
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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
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Questions / Contact Information
Patricia H. Strachan RN PhD
Associate Professor
McMaster University
School of Nursing
Hamilton, ON, Canada
strachan@mcmaster.ca
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