New and Ongoing Projects
Improving DECIsion‐making about goals of care for hospitalized, elDerly patiEnts: a "multi‐incubator unit" study (The iDECIDE Study)

Principal investigator: Dr. John You, McMaster University

The overall objective of our program of research is to improve end-of-life (EOL) communication and decision-making for seriously ill, hospitalized elderly patients. By improving communication and decision-making near or at the EOL, we have the opportunity to dramatically improve the patients' and families' experience as they journey through the final days, improve the work experience for health care professionals, and avoid unwanted aggressive medical care at the EOL.

In our previous CIHR and partner-funded research, we identified key barriers to EOL communication and decision-making. Informed by this work, we are assembling a multi-faceted bundle of interventions that aims to reduce these barriers: (1) a suite of web- and video-based decision support tools to prepare patients and families to make decisions about their care near EOL; (2) a coaching and team-building program to increase healthcare providers' EOL communication skills and build capacity to engage patients and families in goals of care discussions in an inter-professional, team-based manner.

The objective of the iDECIDE study is to engage 3 'incubator units' across Canada (Ward of the 21st Century in Calgary, Hamilton General Hospital, and Montreal General Hospital) to pilot test and refine the tools in this bundle before moving to wide scale dissemination and evaluation of these knowledge products.

The iDECIDE study is supported by a 2 year research grant from TECH VALUE NET ( and in-kind support from partners, including Hamilton Health Sciences, Alberta Innovates Health Solutions, and McGill University Health Centre.

Improving General Practice Advance Care Planning (IGAP)

PIs: Dr. Daren Heyland and Dr. Michelle Howard

What is Advance Care Planning (ACP)?
Advance Care Planning (ACP) is the process by which a person considers options about future health care decisions and identifies their wishes. An advance care plan is a verbal or written instruction describing what kind of care an individual would want (or not want) if they were no longer able to speak for themselves.

What is the IGAP study?

The purpose of this study is to increase ACP completion rates by patients and families and stimulate greater interaction between these patients and their families and their health care providers in primary care settings in Canada.

The study aims to answer the following questions:

1) To what extent are patients in primary care currently completing key components of ACP?
2) What are the barriers and facilitators to implementing ACP in primary care (from the perspective of patients and health care professionals)?
3) What knowledge products/tools can be developed to narrow the evidence-practice gap and do these tools improve ACP engagement?
4) Does this ACP engagement strategy (audit and feedback, facilitated tool development and networking) improve ACP rates at the individual primary care site level?
5) What are the economic consequences associated with increased ACP engagement?

The IGAP study will start in 2014. Family practices from British Columbia, Alberta and Ontario will participate.

For more information contact Michelle Howard

Understanding Compassion at the End of Life

Compassionate care has long been identified as an essential feature of quality health care, especially in the context of patient suffering. While the importance of compassion is given credence in clinical health care, there is little understanding of what constitutes compassion and its effect on patients. While a growing body of empirical research has demonstrated the importance of compassion, this work has been largely confined to the social sciences, with little clinical research directly exploring the importance and impact of compassion on patients facing the end of life. Despite its centrality to healthcare, the precise nature of compassion is contested amongst scholars, with definitions identifying it as an attitude, feeling, trait or state that arises in witnessing suffering accompanied by a response aimed at amelioration. An equally remarkable deficiency within the empirical literature is the absence of patient perspectives, the advocates and potential benefactors of compassionate care. While compassionate care is vital across the cancer journey, it is particularly important amongst palliative care patients, where the goal of ameliorating multi-dimensional suffering is both a unique challenge and specific aim of palliative care.

Despite being relegated to the realm of 'touchy feely' or 'soft skills', the importance of compassion to patients cannot be easily dismissed, especially in relation to addressing spiritual needs where features associated with compassionate care are consistently identified by patients as being paramount.  Palliative patients have consistently identified the psychosocial and spiritual domains of care as being equally important, and in some cases more important, than other health domains in relation to their quality of life.  While patients desire to have their spiritual needs addressed, health care professionals, are challenged to adequately address this vital domain of end of life care. Research investigating patient spiritual needs and patient perceptions of quality spiritual care identify features associated with compassion as being paramount, with more extrinsic or task-based knowledge and skills such as spiritual screening, religious rituals, prayer, playing an important, but secondary role. Attributes associated with compassion have been identified as the quintessential indicator and outcome of authentic spirituality by virtually every major faith tradition.  Though having religious antecedents, the language of compassion is embedded within the vernacular of secularized society. As such, it traverses the sacred and the secular, providing a medium for accessing the spiritual needs and experiences of all patients.

This novel study will determine how advanced cancer patients facing the end of life understand and experience compassion as received from health care professionals, with a particular focus on the significance of compassion to patients' spiritual well-being and the delivery of spiritual care by their health care providers. Fifty advanced cancer inpatients from diverse tumour groups will be recruited for this qualitative study. The components of compassion identified in this study will provide the foundation for an empirical and practical model that can be readily incorporated into clinical practice, resulting in reduced burden and enhanced quality of life for advanced cancer patients. The following three research questions will be examined in this grounded theory study:

  1. How do advanced cancer patients facing the end of life understand and experience compassion?
  2. What is the connection between compassion and spiritual well-being at the end of life?
  3. How do patients' perceptions of compassion inform and shape the delivery of spiritual care by health care professionals working at the end of life?


Dr. Shane Sinclair PhD
Assistant Professor
Cancer Care Research Professorship
Faculty of Nursing, University of Calgary

Clinician Scientist - Person Centred Care
Alberta Health Services, Cancer Care, Tom Baker Cancer Centre

Adjunct Assistant Professor
Division of Palliative Medicine
Department of Oncology
Faculty of Medicine, University of Calgary

DECIDE: DECIsion-making about goals of care for hospitalized meDical patiEnts

BACKGROUND: Canada's aging population is increasingly exposed to potentially unwanted technology at the end of life (EOL). 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. Moreover, 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 hospitalized patients, their families, and their healthcare providers. Improved communication and decision-making about goals of care (defined here as the use of life sustaining technologies near the EOL) 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 hospitalized patients in Canada and their families, but their needs related to these issues remain unmet. The objective of the DECIDE 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 physicians and nurses. This study will complement a companion, CIHR-funded study entitled ACCEPT, which is characterizing barriers and facilitators to this process from the perspectives of seriously ill hospitalized patients and their families. Insights from our work will inform EOL care in Canadian hospitals. In particular, we will use results from these two studies to design and test interventions to improve communication and decision-making regarding goals of care between seriously ill hospitalized patients and their healthcare providers.

RESEARCH QUESTIONS: From physician and nurse perspectives: 1) What are the barriers impeding communication and decision-making about goals of care 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 hospitalized patients and their families?

METHODS: This multicentre study will use a mixed methods design involving collection of quantitative and qualitative data. The quantitative component of the study will distribute questionnaires (developed based on literature review, external focus group/one-to-one consultation, and pilot-testing) to a representative sample of 282 staff physicians, 798 residents, and 590 nurses who provide care for patients on medical teaching units (MTUs) at 12 participating hospitals from 6 Canadian provinces. In the qualitative component, we will conduct open-ended interviews with approximately 24 physicians (a combination of staff physicians and residents) and 24 nurses at 3 participating hospitals, asking them to describe encounters with patients and families in which EOL discussions went particularly well and unwell (critical incident technique). The purpose of this mixed-methods design is to obtain a detailed understanding of the relevant phenomena impeding communication and decision-making from the perspectives of physicians and nurses through the collection of qualitative data (which will provide richer, more nuanced data regarding existing barriers not otherwise captured through the quantitative data collection) and quantitative data. Quantitative and qualitative data will be collected concurrently and analyzed independently of each other, then integrated at the interpretive stage. This understanding will allow us to develop strategies to improve EOL care.

IMPLICATIONS: The DECIDE study is a logical extension of our prior work which has identified EOL communication and decision-making as a priority for improving EOL care amongst seriously ill hospitalized patients in Canada. This study, in combination with our companion, funded study, ACCEPT, will enrich our understanding of the current quantity and quality of EOL communication and decision-making, barriers and facilitators to this process, 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, and will allow us to design and test specific interventions tailored to the Canadian context to improve communication and decision-making about goals of care in seriously ill hospitalized patients.

Contact: Dr. John You

ACCEPT Study: Advance Care Planning Evaluation in Elderly Patients. A multi-center, prospective study.

Our health care system is under siege- an aging population, patients living longer with chronic illness, and an increasing demand for services at end of life contribute to escalating costs and utilization patterns that are unsustainable. In a recent national survey, more than 80% of respondents were concerned the quality of health care in Canada will decline as a result of increased strain on the health care system as our population gets older. Advance Care Planning (ACP) may offer some assistance with reducing health care costs for older Canadians and yet, at the same time, improving quality of care. ACP is the process by which a person considers options about future health care decisions and identifies their wishes. An advance care plan is a verbal or written instruction describing what kind of care an individual would want (or not want) if they are no longer able to speak for themselves. ACP has been shown to increase the quality of life of dying patients, improve the experience of family members, and decrease health care costs.

Under the leadership of the Canadian Hospice and Palliative Care Association (CHPCA), clinicians, researchers and decision makers have been meeting for the past 3 years to develop a national strategy to implement ACP in Canada. The Calgary Zone of Alberta Health Services and Fraser Health Authority in British Columbia have led the nation in developing and implementing system-wide strategies to increase ACP amongst the population they serve. However, there has been no evaluation of the effectiveness of these efforts from the perspective of patients and families; many questions pertaining to the barriers and facilitators to implementation and the impact of ACP on outcomes in Canada remain. This study is not primarily about whether ACP works, it is more about how best to implement it. Decision-makers in these and other regions need this critical feedback from end users to inform future initiatives designed to improve the quantity and quality of ACP. Canadian researchers have recently developed and validated a satisfaction tool to measure patient and family perspectives on end of life (EOL) communication and decision-making. Building upon collaboration with decision makers and researchers interested in ACP, we have developed this proposal to evaluate ACP in hospitals across Canada with the overall objective of increasing the quality and quantity of ACP efforts specifically, and the overall quality of end of life (EOL) care in general. We propose to conduct a prospective audit of current practice related to ACP in elderly patients at high-risk for dying and their families. We will determine the extent to which these patients and families have engaged in ACP, what barriers and facilitators they perceive, and how satisfied they are with communication and decision making at the EOL. We hypothesize that current rates of ACP in these patients is low and that satisfaction with EOL communication and decision-making is suboptimal. Informed by a baseline evaluation of site strengths, weaknesses and barriers, we propose to develop tailored interventions to enable participating sites to improve their success with ACP during the entire grant cycle. By repeating the audit and feedback cycle annually, we will enable sites to make continuous efforts to improve their performance and be able to evaluate the effect of our audit/feedback/tailored intervention strategy compared to baseline. Additionally, for those patients who have engaged in ACP activities, we can compare their outcomes to those who have not. The insights we gain from evaluating and improving ACP will be disseminated throughout Canada via CHPCA.

If you are interested in participating in the ACCEPT study, please contact study chair, Daren Heyland ( For a complete copy of the protocol, click here .

Advanced COPD: Intervention with a modular educational program and an advanced care team. The COPD IMPACT Study

PI: G. Rocker. Building on the findings from a previous multi-centre study of seriously ill hospitalized patients, the COPD IMPACT research program, endorsed by CARENET and funded by CIHR, tests the feasibility of implementing a home based educational package followed by a palliative care supportive initiative for reducing symptom and caregiver burden for patients living at home with advanced chronic obstructive pulmonary disease.

Development and Evaluation of an intervention to engage interprofessional health care teams, patients and families in shared decision making about the level of care in the intensive care unit

J Kryworuchko (doctoral thesis). Quality EOL care has been described as including excellent collaboration and communication within the critical care team, consulting palliative care specialists, achieving excellence in symptom assessment and management, using a family centered model of care, holding regular interdisciplinary family meetings that focus on shared decision making (SDM), and providing support to meet the needs of families of critically ill patients.

The purpose of this project is to develop and evaluate an intervention to engage interprofessional health care team members , patients and families in SDM about the level of care in the ICU. Specific aims include: a) to describe the decision support needs of interprofessional team members, patients and families regarding decisions about level of care in the ICU in the local context, the ICU of a tertiary care hospital; b) to identify the barriers and facilitators c) to critique the available evidence for the effectiveness of interventions intended to improve the quality of EOL decision making in the ICU; d) to develop a tailored evidence-based SDM intervention that can be implemented in ICU; and e) to determine the feasibility of implementing this intervention in a pilot study.

Quality End of Life Care for Patients with Advanced Hematological Disorders

P.I. S. Pleasance. The objectives of this project are to describe satisfaction with care, quality of life, and caregiver burden in patients with end stage hematological malignancies, and to assess the content and acceptability of the CANHELP satisfaction questionnaires in this patient population.

A comparison of care received at the end of life in Canada and the U.S.

PI: R Fowler. We propose to build on the expertise of CIHI and the Dartmouth Atlas of Health Care to develop an initiative examining care delivery and measures of quality of care and EOL care in Canada and the US. Specifically, we wish to compare EOL care administered to all Americans and Canadians for which data exists, during a defined, contemporary period, by describing and comparing care delivered during the last year of life, last six months of life, and last month of life among US Medicare beneficiaries and Canadian Medicare beneficiaries. We plan to describe EOL care within each country; and in addition, we will make comparisons involving a number of variables, considering the following factors: time of comparison, decedent age range of comparison, the duration of time ante ceding death to compare (e.g. 2 years, 1 year, 6 months, 1 month and the time of death). We will also explore the above in relation to time-to-death.

Experiences of Hospitalized Patients with End-Stage Illness

L Chan (doctoral thesis). While palliative care is now being promoted as the best approach to care for all patients with life-threatening illness, there are constraints within the acute medical setting that make it difficult to provide such care. What is needed is an investigation of the patient experiences of hospitalization, during the end stage, with an appreciation of the acute medical context. The knowledge gained from this study will inform the clinical care provided to patients hospitalized at the EOL. Furthermore, it will inform health care policy and educational initiatives for health care providers.

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