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

Patricia H. Strachan RN, PhD Associate Professor, McMaster University

School of NursingRobert Robson MDCM, MSc, FRCP(C)

Health Care System Safety & Accountability Inc. June 5, 2013

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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 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

• 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

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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

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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

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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

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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

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Findings: Theme 1 Set the stage for prognosis

communication

• Relational aspects• Control • Transparency• HF treatment optimization• Patient support available

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Findings: Theme 2

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)

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?

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

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 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

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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)

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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

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Questions / Contact Information

Patricia H. Strachan RN PhDAssociate Professor McMaster University

School of Nursing Hamilton, ON, Canada

strachan@mcmaster.ca