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

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 (dkh2@queensu.ca). For a complete copy of the protocol, click here .

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.

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.

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.

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.

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.

PI: D Heyland. Every day in hospitals across Canada, frail elderly patients at or near the end of life are faced with decisions related to the use of life support machines. In a recent survey we conducted at several large teaching hospitals across the country, seriously ill patients rated "not being prolonged on life supports" as the most important element in good quality care at the end of life. However, this same group of patients appeared to be quite poorly informed about their treatment options at the end of life. To make an informed choice about the use of life supports at the end of life, patients and their families need to know what can happen over the long term should they choose to go to an intensive care unit and have life supports applied. These long-term outcomes are currently unknown despite their obvious importance to decision making.

The purpose of this study is to describe the 12-month survival and quality of life of patients =80 years of age following critical illness and learn the family caregivers’ perspective on the quality of care provided. We anticipate that 800 patients and families being cared for at 20 intensive care units across Canada will contribute to this project. The information gained will prove invaluable not only to patients and their families but also to their doctors and all health care professionals, who need to better understand the perspectives of those for whom they provide care.