Principal Investigators:

This email address is being protected from spambots. You need JavaScript enabled to view it., McMaster University.
Dr Heather Ross, cardiologist at University Health Network in Toronto and Vice President of the Canadian Cardiovascular Society.

BACKGROUND: Heart failure (HF) is an epidemic with more than 500,000 Canadians affected and 50,000 new cases each year. Approximately 5% to 10% of patients with HF have reached the advanced stage with a median life expectancy of 6 months. In Canada, the number of deaths due to HF is projected to increase to over 10,000 annually by the year 2020, or more than one death every hour. 

Many HF patients have implantable cardioverter-defibrillators (ICDs). As HF patients reach end-of-life (EOL) they are often subject to unwanted and unnecessary ICD shocks that impact quality of life with no clear prolongation of life. For patients with advanced HF, the intensive use of technology in the final months of life is increasing. Mounting evidence suggests that technology-laden EOL care is associated with poorer ratings of quality of life, lower ratings of satisfaction with EOL care, and increased family anxiety and depression. The use of intensive technology at the EOL incurs enormous costs, placing increased strain on finite healthcare resources. 

Addressing this problem and thus providing high quality, patient-centered EOL care will require improved communication and decision-making about goals of care among seriously ill HF patients, their families and their healthcare providers. Improved communication and decision-making about goals of care (which we define here as the use, non-use, or deactivation of life sustaining technologies near EOL, including cardiac devices such as ICDs) offers a potential win-win solution, simultaneously improving quality of care and optimizing health care utilization. Our previous research showed that EOL communication and decision-making are important to HF patients and their families, but their needs related to these issues remain unmet. The objective of the DECIDE-HF Study is to identify barriers and potential solutions to improve communication and decision-making about goals of care, focusing upon the perspectives of hospital-based staff cardiologists, cardiology fellows and cardiology nurses who provide care to patients with HF. 

RESEARCH QUESTIONS: From the perspective of staff cardiologists, cardiology fellows and cardiology nurses who provide care to patients with HF: 1) What are the barriers impeding communication and decision-making about goals of care, including ICD deactivation, and what is their importance? 2) What are potential solutions to improve communication and decision-making about goals of care? 3) How do physicians and nurses view their own and each other's suitability to fulfill different roles in deciding about goals of care with seriously ill HF patients and their families? 

METHODS: This multicentre study of HF care will use a sequential mixed methods design involving collection of quantitative data in Phase 1 and qualitative data in Phase 2. The quantitative phase of the study will involve distribution of questionnaires (developed based on literature review, external focus group/one-to-one consultation, and pilot-testing) to staff cardiologists, cardiology fellows and cardiology nurses at 10 participating hospitals from 6 Canadian provinces who provide care for HF patients. In the qualitative phase, we will conduct open-ended interviews to collect data regarding 120 critical incidents in which goals of care discussions went particularly well or unwell, as described by 30 healthcare providers (staff cardiologists, cardiology fellows and cardiology nurses) at 4 participating hospitals (critical incident technique). We will use quantitative survey data to identify a purposeful sample of interview participants: (i) who have a lot vs. little experience with goals of care discussions (intensity sampling), and (ii) who are average survey respondents (typical case sampling). The purpose of this mixed-methods design is to obtain a detailed understanding of the relevant phenomena impeding EOL communication and decision-making from the perspectives of healthcare providers through the collection of quantitative data and of qualitative data, the latter of which will provide richer, more nuanced data regarding existing barriers not otherwise captured through the questionnaires. Quantitative and qualitative data will be integrated at the interpretive stage. This understanding will allow us to develop strategies to improve EOL care.

IMPLICATIONS: This study will enrich our understanding of the barriers and facilitators to EOL communication and decision-making, and lead to potential solutions to improve this aspect of care. The information we obtain will be of value to institutions, clinical care teams and individual physicians interested in improving the quality of EOL care. Our findings will enable us to design and test specific interventions tailored to the Canadian context to improve communication and decision-making about goals of care for seriously ill hospitalized patients with HF.

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