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The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization.This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city).We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20).Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.

Background: Lack of consistency in palliative care language can serve as barriers when designing, delivering, and accessing high-quality palliative care services. Objective: To develop a consensus-...

Background Patient videos about advance care planning (ACP; hereafter “Videos”), were developed to support uptake of provincial policy and address the complexity of patients’ decision-making process. We evaluate self-administered ACP Videos, compare the studies’ choice of outcomes, show correlations between the patients’ ACP actions, and discuss implications for health care policy. Objective To test the efficacy of the Videos on patients’ ACP/goals of care designation conversations with a health care provider. Design, Setting, and Participants Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle. Interventions Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care. Main Outcomes and Measures The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions. Results We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; P = 0.032). Adjusted for the quality of conversations, there was no significant difference. Conclusions Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.

Older persons with serious illnesses living in rural communities are an underserved population. They often live with heavy symptom burden and poor quality of life with limited access to resources. Nav-CARE (Navigation: Connecting Accessing Resourcing and Engaging) was developed to specially train and mentor volunteer navigators who help connect older persons with serious illness to the resources and information they need. Aims: This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers. Methods: Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation. Results: Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again. Conclusions: Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.

In 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together.We employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed.Fifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies.Implementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.

ObjectiveAdvance care planning (ACP) and goals of care designation (GCD) performance indicators were developed and implemented across Alberta, Canada, and have been used to populate an electronic ACP/GCD dashboard. The study objective was to investigate whether users found the indicators and dashboard usable and acceptable.MethodsThis study employed a survey among a convenience sample of ACP/GCD community of practice members. The survey included questions on demographics, clinical practices and a validated usability questionnaire for the dashboard, System Usability Scale (SUS).ResultsEighteen of 33 community of practice members (54.5%) answered the survey. Half of participants had a leadership or management role for ≥10 years. Most respondents (55.6%) had access to the ACP/GCD dashboard, and various ACP/GCD audit resources were used. Mean SUS was 70.83 (SD 19.72), which was above the threshold for acceptability (68). Approximately three-quarters of respondents (72.7%) found the indicators informative and meaningful for their practice, and over half (54.5%) were willing to use the dashboard and/or indicators to change their ACP/GCD practice.ConclusionThe nine indicators and dashboard were acceptable and usable for monitoring ACP/GCD performance. This set of indicators shows promise for describing and evaluating ACP/GCD uptake throughout a complex, multisector healthcare system.

Background Improving access to palliative care for Canadians requires a focused collective effort towards palliative and end-of-life care advocacy and policy. However, evolution of modern palliative care in Canada has resulted in stakeholders working in isolation. Identification of stakeholders is an important step to ensure that efforts to improve palliative care are coordinated. The purpose of this analysis is to collectively identify, classify and prioritize stakeholders who made contributions to national palliative care policies in Canada. Methods A systematic grey literature search was conducted examining policy documents (i.e. policy reports, legislative bills, judicial court cases) in the field of palliative care, end-of-life care and medical assistance in dying, at the national level, over the last two decades. Organizations’ names were extracted directly or derived from individuals’ affiliations. We then classified stakeholders using an adapted classification approach and developed an algorithm to prioritize their contributions towards the publication of these documents. Results Over 800 organizations contributed to 115 documents (41 policy reports, 11 legislative, 63 judicial). Discussions regarding national palliative care policy over the last two decades peaked in 2016. Stakeholder organizations contributing to national palliative care policy conversations throughout this period were classified into six types broadly representative of society. The ranking algorithm identified the top 200 prioritized stakeholder organizations. Conclusions Stakeholders from various societal sectors have contributed to national palliative care conversions over the past two decades; however, not all the stakeholder organizations engaged to the same extent. The information is useful when a need arises for increased collaboration between stakeholders and can be a starting point for developing more effective engagement strategies.

Introduction Early integration of palliative care (PC) with oncological care is associated with improved outcomes in patients with advanced cancer. Limited information exists on the frequency, timing, and predictors of PC consultation in patients receiving oncological care. The Cross Cancer Institute (CCI) is the sole tertiary cancer center serving the northern half of the Canadian province of Alberta, located in the city of Edmonton. The objectives of this study were to estimate the proportion of patients with advanced cancer at the CCI who received consultation by the CCI PC program and the comprehensive integrated PC program in Edmonton, and to determine the timing and predictors of consultation. Materials and Methods In this secondary analysis of routinely collected health data, adult patients who died between April 2013 and March 2014, and had advanced disease while under the care of a CCI oncologist, were eligible. Data from the Alberta Cancer Registry, electronic medical records, and Edmonton PC program database were linked. Results Of 2,253 eligible patients, 810 (36%) received CCI PC consultation. Median time between consultation and death was 2 months (range, 1.1–5.4). In multivariable logistic regression analysis, age, residence, income, cancer type, and interval from advanced cancer diagnosis to death influenced odds of receiving consultation. Among 1,439 patients residing in Edmonton, 1,121 (78%) were referred to the Edmonton PC program. Conclusion A minority of patients with advanced cancer received PC consultation at the tertiary cancer center, occurring late in the disease trajectory. Frequency and timing of PC consultation varied significantly, according to multiple factors. Implications for Practice Clinical and demographic factors are associated with variations in frequency and timing of palliative care consultation at a cancer center and may, in some cases, reflect barriers to access that warrant attention.

Background In 2014, a province-wide policy for advance care planning (ACP) and Goals of Care Designation (GCD) was implemented in Alberta, Canada; nevertheless, few quality indicators have been rigorously developed or evaluated for measuring the uptake of ACP/GCD. Methods In phase I, we performed a systematic literature review and environmental scan to identify potential ACP/GCD indicators. A Delphi consensus-based approach, consisting of 3 rounds of face-to-face meetings and/or online surveys, was used to develop a short list of indicators. In phase II, the panelists met face-to-face to operationalize and implement the indicators. In phase III, two validated questionnaires and semi-structured interviews of 60 individuals (stratified by manager/practitioner and physician/nurse) are being used to evaluate the usability and acceptability of the implemented indicators on a dashboard interface. Results A total of 132 potential indicators were identified in phase I. The indicators were reduced and refined to 18 after 3 Delphi rounds. Phase II resulted in 9 valid and feasible indicators in a measurable format (i.e. numerator, denominator, data source defined). The Phase III protocol is under ethical review and potential participants’ recruitment is underway. Conclusions Of 132 quality indicators for ACP/GCD, 9 are feasible, valid, usable and acceptable for monitoring performance in the rollout of ACP/GCD. This set of indicators shows promise for describing and evaluating ACP/GCD uptake throughout a complex, multi-sector healthcare system.

Background In 2014, Alberta’s health service providers implemented a province-wide Advance Care Planning (ACP) and Goals of Care Designation policy. Despite significant efforts, barriers to full implementation remain including lack of public comprehension across health, legal and other public systems. A World Cafe consultation revealed multi jurisdictional recommendations to ‘normalize ACP.’ Methods Through the ACP Collaborative Research Innovation Opportunities program, we formed a collaboration with lawyers, Legal Education Society of Alberta, Canadian Bar Association, Law Society of Alberta, palliative care physicians, patient advocates, academics, provincial health care providers and other stakeholders. A community of practice propagated spontaneously. Surveys and focus groups identified barriers, knowledge and resource gaps, and novel solutions, including joint health-legal education. Results Traditional approaches to ACP have been siloed. We expand on the innovative medico-legal framework to include other stakeholders including community agencies, faith groups, health advocacy agencies, national ACP projects, and the financial planning and insurance industries. Ongoing collaborative activities include community engagement, education, policy and practice innovation, which bundles activities relating to health care planning with those relating to personal and financial planning. Our business case addresses the identified gaps and adopts public recommendations through activities to coordinate, integrate and/or support development/implementation of a community volunteer program, an electronic registry for ACP and Goals of Care documentation, and a legal toolkit. Conclusion In practice, ACP spans medical, legal, social and personal domains. Multi-disciplinary and multi-sector approaches are posited to improve knowledge and uptake of ACP while improving the quality of life of Albertans.

Background Understanding both costs and consequences of ACP programs is important. Available economic analysis have typically reported the consequences but not the prevalence, frequency, duration and with whom ACP discussions take place. Methods We conducted an economic analysis of ACP discussions alongside a trial evaluating ACP videos, across three clinical settings (cancer, heart and kidney disease) and 18 sites in Alberta, Canada. We administered a Health Services Inventory monthly for three months. Participants were asked to recall ACP discussions with professionals from healthcare, legal, financial and spiritual sectors. Results 241 participants (36.1% female; average age, 66 ± 12.2 years) were interviewed at baseline with 95.0% follow-up over the three months. Participants across cancer (n=36), heart disease (n=24), and renal disease (n=40) settings had in total 100 ACP discussions with professionals from healthcare (n= 58), spiritual (n= 14), legal (n=19) and financial (n=9) sectors. The discussions averaged 20.4 minutes and resulted in completion of 16 Goals of Care Designation GCDs, 14 Personal Directives and 9 financial documents. Discussions mostly occurred outside home (n=82, 80.4%) and patients were almost always accompanied by a family member/friend (n=99, 97%). Conclusion(s) Compensating professionals to engage in ACP discussions represents a substantial segment of ACP program cost. Patients and their family/friends also incur costs travelling to and taking time for appointments. Assessing cost-effectiveness of ACP requires program costs in addition to consequences. Patient engagement likewise benefits from understanding the nature and personal costs of these discussions. These data may help professionals advocate for commensurate compensation

Background Evidence regarding the degree and direction of economic impacts of implementing Advance Care Planning (ACP) is inconsistent. Also, available reviews have not systematically assessed the quality of the costing data in the primary studies. We aimed to synthesize current evidence on the economic impacts of implementing ACP and explore implications for policy and practice. Methods We conducted a comprehensive search of online bibliographic databases. Reference lists of included articles were also reviewed. We assessed the quality of costing in studies using the Consensus on Health Economics Criteria Checklist (CHEC). Results We included 33 studies; the majority were from the USA (78.8%). Studies were conducted in various settings, mostly hospitals (60%). Almost 64% of studies reported cost savings from the healthcare systems’ perspectives; no study included patients’ perspectives (out-of-pocket-costs). Assessing quality of costing using CHEC revealed weaknesses in studies including: flaws with costs identification (37.9%), measurement (39.3%), and valuation (44.8%); no consideration of intervention costs (87.9%); not including all relevant variables in sensitivity analyses (34.5%); and not discounting the costs (55.6%). Discussion We detected substantial methodological issues with current economic evaluations of ACP that compromise the validity of evidence. To inform policy makers about ACP, which is a multifaceted process, methodologically robust studies are needed that capture costs of the program from all major payers. A comprehensive report on cost evaluations is highly recommended. Meanwhile, respecting patient choice remains a valid clinical basis for promoting use of ACP.

Background The ACCEPT survey (Audit of Communication, CarE Planning, and DocumenTation) evaluates the quality of Advance Care Planning (ACP) practice through patient-reported experience measures and ACP documentation audit. We evaluated practice three years post system-wide policy for ACP implementation and patient awareness of their “Goals of Care Designation” (GCD) medical order. Method Consecutive, consenting patients over 55 years with serious, chronic illness or age >80 years with any acute admission were prospectively enrolled from acute medical units in seven hospitals across Alberta, Canada. Research assistants administered the ACCEPT survey within 5 days of admission and reviewed participant charts for ACP and GCD documentation. Results Of 502 patients (mean age 81 years, 53% female) 93% had a GCD order in their chart but only 30% were aware of this. 33% reported having discussed none of the five key elements of goals of care conversations (patients’ values and beliefs, prognosis, patients’ fears and concerns, treatment preferences and prior ACP documentation or conversations) with a hospital clinician. Raw agreement between patients’ expressed preferences for EOL care and documentation in patient charts was 56% (concordance kappa=0.273). Multivariate regression analysis found that awareness of GCD order was associated with health region, patient frailty, quality of goals of care conversations in hospital and whether ACP conversations were considered important to the patient. Conclusions Despite a system-wide policy, we found evidence of serious concerns about the quality of ACP and GCD practice. Intentional quality improvement interventions are likely needed to enhance practice and achieve patient-centred care.

Context Current health care delivery models have increased the need for safe and concise patient handover. Handover interventions in the literature have focused on the use of structured tools but have not evaluated their ability to facilitate retention of patient information. Objectives In this study, mock pictorial displays were generated in an attempt to create a snapshot of each patient's medical and social circumstances. These pictorial displays contained the patient's photograph and other disease- and treatment-related images. The objective of this randomized trial was to assess the ability of these snapshots to enhance delayed information recall by care providers. Methods Participating physicians were given four advanced cancer patient histories to review, two at a time over two weeks. Pictorial image displays, referred to as the Electronic Whiteboard (EWB) were added, in a randomized manner to half of the textual histories. The impact of the EWB on information recall was tested in immediate and delayed time frames. Results Overall, patient information recall declined significantly over time, with or without the EWB. Still, this trial demonstrates significantly higher test scores after 24 hours with the addition of pictures to textual patient information, compared with textual information alone (P = 0.0002). A more modest improvement was seen with the addition of the EWB for questionnaires administered immediately after history review (P = 0.008). Most participants agreed that the EWB was a useful enhancement and that seeing a patient's photograph improved their ability to retain information. Conclusion Most studies examining the institution of handover protocols in the health care setting have failed to harness the power of pictures and other representative images. This study demonstrates the ability of pictorial displays to improve both immediate and delayed recall of patient histories without increasing review time. These types of displays may be amenable to generation by software programs and have the potential to enhance information transfer in various settings.

Objectives: Single, program wide multi-site prospective study examining the (1) accuracy of non-cancer clinician prediction survival (CPS) by palliative practitioners on 1st assessment. (2) Factors affecting CPS; (3) potential impact on clinical care.Design and methods: Single, program wide multi-site prospective study (n = 282). CPS was divided into four clinically relevant time periods (≤2 weeks, >2 to ≤6 weeks, >6 to ≤12 weeks, and >12 weeks). Multivariate analysis was done on six predictor variables.Results: More than ½ of patients died before their clinically relevant predicted time periods (of more than 2 weeks). Only one out of the six predictor variables impacted on clinician accuracy on logistic regression and that being the survival prediction time periods.Conclusion: Non-cancer CPS, even by palliative practitioners, remains overly optimistic. This raises the question in that these individuals may have been potentially over-treated.

Most cancer patients want to die at home, but scaleable models to achieve this are not well researched. Our objective was to investigate the temporal association of homecare nursing, especially by generalist nurses, with reduced end-of-life hospitalizations.We conducted a retrospective Canadian cohort study of end-of-life cancer decedents during 2004-2009 in Ontario (ON), Nova Scotia (NS), and British Columbia (BC), which have homecare systems that use generalist nurses to provide end-of-life care. Each province linked administrative databases to examine the association during the last six months of life between the homecare nursing rate and the hospitalization rate in the subsequent week, using standardized definitions and controlling for other covariates. We dichotomized nursing into standard and end-of-life care intent.Our cohort included 83,827 cancer decedents. Approximately 55% of decedents were older than 70 and the most common cancer was lung. Nearly 85% of the cohort had at least one hospital admission. Receiving end-of-life compared to standard homecare nursing significantly reduced a patient's hospitalization rate by 34%, 33%, and 17% in ON, BC, and NS. In the last month of life patients having a standard nursing rate of greater than five hours compared to one hour per week had a significantly lower hospitalization rate (relative reduction of 15%-23%) across the three provinces.Our study showed a protective effect of nursing with an end-of-life intent on hospitalization across the last six months of life and of standard nursing in the last month. This finding's generalizability is strengthened, since the trends were similar across three different homecare systems.

Context Despite being commonplace in health care systems, little research has described home care nursing's effectiveness to reduce acute care use at the end of life. Objectives To examine the temporal association between home care nursing rate on emergency department (ED) visit rate in the subsequent week during the last six months of life. Methods We conducted a retrospective cohort study of end-of-life cancer decedents in Ontario, Canada, from 2004 to 2009 by linking administrative databases. We examined the association between home care nursing rate of one week with the ED rate in the subsequent week closer to death, controlling for covariates and repeated measures among decedents. Nursing was dichotomized into standard and end-of-life care intent. Results Our cohort included 54,576 decedents who used home care nursing services in the last six months before death, where 85% had an ED visit and 68% received end-of-life home care nursing. Patients receiving end-of-life nursing at any week had a significantly reduced ED rate in the subsequent week of 31% (relative rate [RR] 0.69; 95% confidence interval [CI] 0.68, 0.71) compared with standard nursing. In the last month of life, receiving end-of-life nursing and standard nursing rate of more than five hours/week was associated with a decreased ED rate of 41% (RR 0.59, 95% CI 0.58, 0.61) and 32% (RR 0.68, 95% CI 0.66, 0.70), respectively, compared with standard nursing of one hour/week. Conclusion Our study showed a temporal association between receiving end-of-life nursing in a given week during the last six months of life, and of more standard nursing in the last month of life, with a reduced ED rate in the subsequent week.

Advance care planning (ACP) is the process of thinking about, discussing and documenting one’s preferences for future health care. ACP has important benefits: people who have a written directive are more likely to receive care that accords with their preferences, have fewer hospitalizations, and die in their preferred location. This article focuses on the important role that legal professionals have in advising and assisting clients with ACP. Studies report that people who have a written advance care plan are more likely to have received assistance in preparing the document from a lawyer than from a doctor. Yet virtually no research engages with the legal profession to understand lawyers’ attitudes, beliefs, and practices in this important area. This article starts to fill this gap by reporting the findings of a survey of lawyers in the province of Alberta. The results reveal lawyers’ practices in relation to ACP, their perceptions of their professional role and factors that support or hinder lawyers in working with clients on ACP, and their preferences for resources to assist them in helping their clients. To the authors’ knowledge, this is the first survey of lawyers on their practices in relation to ACP.

BackgroundAdvance care planning (ACP) encompasses both verbal and written communications expressing preferences for future health and personal care and helps prepare people for healthcare decision-making in times of medical crisis. Healthcare systems are increasingly promoting ACP as a way to inform medical decision-making, but it is not clear how public engagement in ACP activities is changing over time.MethodsRaw data from 3 independently conducted public polls on ACP engagement, in the same Canadian province, were analysed to assess whether participation in ACP activities changed over 6 years.ResultsStatistically significant increases were observed between 2007 and 2013 in: recognising the definition of ACP (54.8% to 80.3%, OR 3.37 (95% CI 2.68 to 4.24)), discussions about healthcare preferences with family (48.4% to 59.8%, OR 1.41 (95% CI 1.17 to 1.69)) and with healthcare providers (9.1% to 17.4%, OR 1.98 (95% CI 1.51 to 2.59)), written ACP plans (21% to 34.6%, OR 1.77 (95% CI 1.45 to 2.17)) and legal documentation (23.4% to 42.7%, OR 2.13 (95% CI 1.75 to 2.59)). These remained significant after adjusting for age, education and self-rated health status.ConclusionsACP engagement increased over time, although the overall frequency remains low in certain elements such as discussing ACP with healthcare providers. We discuss factors that may be responsible for the increase and provide suggestions for healthcare systems or other public bodies seeking to stimulate engagement in ACP.

The quality of data comparing care at the end of life (eol) in cancer patients across Canada is poor. This project used identical cohorts and definitions to evaluate quality indicators for eol care in British Columbia, Alberta, Ontario, and Nova Scotia. This retrospective cohort study of cancer decedents during fiscal years 2004&ndash, 2009 used administrative health care data to examine health service quality indicators commonly used and previously identified as important to quality eol care: emergency department use, hospitalizations, intensive care unit admissions, chemotherapy, physician house calls, and home care visits near the eol, as well as death in hospital. Crude and standardized rates were calculated. In each province, two separate multivariable logistic regression models examined factors associated with receiving aggressive or supportive care. Overall, among the identified 200,285 cancer patients who died of their disease, 54% died in a hospital, with British Columbia having the lowest standardized rate of such deaths (50.2%). Emergency department use at eol ranged from 30.7% in Nova Scotia to 47.9% in Ontario. Of all patients, 8.7% received aggressive care (similar across all provinces), and 46.3% received supportive care (range: 41.2% in Nova Scotia to 61.8% in British Columbia). Lower neighbourhood income was consistently associated with a decreased likelihood of supportive care receipt. We successfully used administrative health care data from four Canadian provinces to create identical cohorts with commonly defined indicators. This work is an important step toward maturing the field of eol care in Canada. Future work in this arena would be facilitated by national-level data-sharing arrangements.

Advance care planning (acp) is an important process in health care today. How to prospectively identify potential local barriers and facilitators to uptake of acp across a complex, multi-sector, publicly funded health care system and how to develop specific mitigating strategies have not been well characterized. We surveyed a convenience sample of clinical and administrative health care opinion leaders across the province of Alberta to characterize system-specific barriers and facilitators to uptake of acp. The survey was based on published literature about the barriers to and facilitators of acp and on the Michie Theoretical Domains Framework. Of 88 surveys, 51 (58%) were returned. The survey identified system-specific barriers that could challenge uptake of acp. The factors were categorized into four main domains. Three examples of individual system-specific barriers were &ldquo, insufficient public engagement and misunderstanding,&rdquo, &ldquo, conflict among different provincial health service initiatives,&rdquo, and &ldquo, lack of infrastructure.&rdquo, Local system-specific barriers and facilitators were subsequently explored through a semi-structured informal discussion group involving key informants. The group identified approaches to mitigate specific barriers. Uptake of acp is a priority for many health care systems, but bringing about change in multi-sector health care systems is complex. Identifying system-specific barriers and facilitators to the uptake of innovation are important elements of successful knowledge translation. We developed and successfully used a simple and inexpensive process to identify local system-specific barriers and enablers to uptake of acp, and to identify specific mitigating strategies.

This article outlines the development and implementation of a consensus development conference (CDC).As a rapid method for data synthesis, a CDC affords a timely and methodic means of evaluating data to effect change in healthcare policy.The CDC methodology was adopted for the Palliative Care Matters initiative due to its engagement with the public, scientific community, and palliative care stakeholders.It requires the involvement of seven key groups/roles to successfully effect change: a manager, steering committee, scientific expert panel, public lay panel, a lay-panel facilitator, a public audience, and the media for dissemination.This article also details the background information and guiding principles on which the Palliative Care Matters initiative was formed. A Canadian Reference Working Group was formed to develop the Palliative Care Matters guiding principles into six scientific questions. The scientific articles in this supplemental issue each present evidence and expert recommendations that speak to one of the Palliative Care Matters scientific questions.

Effectively engaging Canadians to help improve the quality and delivery of healthcare to dying Canadians is a priority for healthcare administrators and policy makers. This report shares our evaluation and learnings, applying a series of strategies to encourage policy formation. The Palliative Care Matters consensus development conference held in Ottawa on November 7-9, 2016 brought together members of the public, stakeholders, scientific experts, and a lay panel of interested Canadians to examine Canadian public opinions on palliative care and question experts on how palliative care could be enhanced.This report shares our evaluation and learnings applying a series of strategies to encourage policy formation.An evaluation was conducted to measure the short, intermediate, and identify long-term outcomes of the conference. The overall performance of the conference for public engagement from November 2016 to mid June 2017 is shared.The outcome of the conference was positive. It was attended and watched online by over 400 participants, received national print, radio and television coverage, and generated high exposure and engagement on social media. Survey results showed that the majority of steering committee, expert, and lay panel members felt a high level of engagement and agreed that the engagement process was successful. Evaluation will be conducted on an ongoing basis for at least another year.

Background: This article details the methods used for a rapid literature review. Objective: The eight scientific articles contained in this Palliative Care Matters supplemental issue synthesize and interpret evidence from the rapid review process outlined in this study. Methods: The methods of the rapid review were adopted from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-P) statement of PRISMA. Results: The current article contains the literature search strategies for both gray and academic literature, resource eligibility criteria for inclusion and exclusion, and tables and figures to outline the literature search process, and delimit the number of resource items captured at each step in the process.

OBJECTIVES Patients with advanced pancreatic cancer (APC) have a poor prognosis and experience a large burden of disease-related symptoms. Despite advancements in the treatment of APC, survival is dismal and controlling disease-related symptoms and maintaining quality of life is paramount. We hypothesize that an improvement in disease-related symptoms, and therefore, a clinical benefit, while on chemotherapy is a predictive marker in APC. MATERIALS AND METHODS Patients 18 and older with APC diagnosed between January 1, 2005 and December 31, 2010 and treated at the Cross Cancer Institute were identified using the provincial cancer registry. Disease symptoms were assessed at baseline and clinical benefit while on chemotherapy was defined using a composite endpoint of improvement in patient-reported pain, opioid consumption, Eastern Cooperative Oncology Group performance status, and/or weight. Best radiologic response, progression-free survival (PFS), and overall survival (OS) were recorded. RESULTS Of 103 patients, the median age was 64, 58% were male and 66% had metastatic disease. At baseline, the majority of patients reported pain (80%), opioid use (61%), or weight loss (71%). In total, 35 (34%) patients received a clinical benefit with treatment but only 6 (17%) of these patients experienced a radiologic response. The median PFS and OS were improved in patients who experienced a clinical benefit (6.6 vs. 4.6 mo; P=0.03 and 11.7 vs. 6.1 mo; P

Objective To characterize health-related quality of life (HRQL) impairment in severely obese subjects, using several validated instruments. Methods A cross-sectional analysis of 500 severely obese subjects was completed. Short-Form (SF)-12 [Physical (PCS) and Mental (MCS) component summary scores], EuroQol (EQ)-5D [Index and Visual Analog Scale (VAS)], and Impact of Weight on Quality of Life (IWQOL)-Lite were administered. Multivariable linear regression models were performed to identify independent predictors of HRQL. Results Increasing BMI was associated with lower PCS (−1.33 points per 5 kg/m2 heavier; P

This study examined the benefits of incorporating screening for distress as a routine part of care for patients with head and neck and neurologic cancers in a tertiary cancer center. Using a comparative 2-cohort pre-post implementation sequential design, consecutive outpatients with head and neck and neurologic cancers were recruited into 2 separate cohorts. Cohort 1 included patients attending clinics during April 2010, before the implementation of the screening program. The program was then implemented and patients completed the Screening for Distress Minimum Dataset (the Edmonton Symptom Assessment System [ESAS] and the Canadian Problem Checklist [CPC]) at each clinic visit. Cohort 2 included patients attending clinics during March 2011. Consenting patients completed screening and outcome measures (ESAS, CPC, and either the Functional Assessment of Cancer Therapy-Brain or the Functional Assessment of Cancer Therapy-Head and Neck). A total of 146 patients (78 head and neck and 68 neurologic) provided data for Cohort 1, and 143 (81 head and neck and 62 neurologic) provided data for Cohort 2. Compared with Cohort 1, patients with neurologic cancers in Cohort 2 reported significantly higher scores on the Functional Assessment of Cancer Therapy: General total and emotional quality of life subscale; fewer high scores (≥ 4) on the ESAS breathlessness item; and fewer problems with fears/worries, frustration/anger, finding meaning in life, and worry about friends/family. Head and neck patients in Cohort 2 reported significantly higher emotional quality of life and fewer problems with eating and weight than those in Cohort 1. Although no definitive causal attributions can be made, patients exposed to routine screening for distress reported better well-being and fewer emotional, physical, and practical problems than historical controls.

Aims: This study examined (1) accuracy of clinician prediction of survival (CPS) by palliative practitioners on first assessment with the use of standardised palliative tools, (2) factors affecting accuracy, (3) potential impact on clinical care. Methods: A multi-site prospective study (n=1530) was used. CPS was divided into four time periods (2 to 6wks, >6 to 12wks and >12wks). Multivariate analysis was assessed on six predictor variables. Results: Overall, median survival of the sample was only 5 weeks. CPS category was accurate only 38.6% of the time, with 44.6% patients dying before the predicted time period. Of six candidate variables, on multivariate analysis only (i) the clinical time periods themselves and (ii) Palliative Performance Scale Conclusion: CPS, even by palliative practitioners, remains overly optimistic with the existence of the horizon effect. This raises the question in that these individuals may have been potentially overtreated.

Background Increasing access to health and social services through service-integration approaches may provide a direct and sustainable way to improve health and social outcomes in low-income families. Methods We did a community-based randomized trial evaluating the effects of two service-integration practices (healthy family lifestyle and recreational activities for children) among low-income families in Alberta, Canada. These two practices in combination formed four groups: Self-Directed (no intervention), Family Healthy Lifestyle, Family Recreation, and Comprehensive (Family Healthy Lifestyle plus Family Recreation programs). The primary outcome was the total number of service linkages. Results We randomized 1168 families, 50 % of which were retained through the last follow-up visit. The number of service linkages for all three intervention groups was not significantly different from the number of linkages in the Self-Directed group (Comprehensive 1.15 (95 % CI 0.98–1.35), Family Healthy Lifestyle 1.17 (0.99–1.38), and Family Recreation 1.12 (0.95–1.32) rate ratios). However, when we explored the number of linkages by the categories of linkages, we found significantly more healthcare service linkages in the Comprehensive group compared to the Self-Directed group (1.27 (1.06–1.51)) and significantly more linkages with child-development services in the Family Healthy Lifestyle group compared to the Self-Directed group (3.27 (1.59-6.74)). The monthly hours of direct intervention was much lower than the assigned number of hours (ranging from 5 to 32 % of the assigned hours). Conclusions Our findings are relevant to two challenges faced by policymakers and funders. First, if funds are to be expended on service-integration approaches, then, given the lack of intervention fidelity found in this study, policymakers need to insist, and therefore fund a) a well-described practice, b) auditing of that practice, c) retention of family participants, and d) examination of family use and outcomes. Second, if child-development services are widely required and are difficult for low-income families to access, then current policy needs to be examined. Trial registration ClinicalTrials.gov, NCT00705328. Registered on 24 June 2008. Electronic supplementary material The online version of this article (doi:10.1186/s13063-016-1444-8) contains supplementary material, which is available to authorized users.

Background: Skeletal muscle depletion (sarcopenia) predicts morbidity and mortality in the elderly and cancer patients. Methods: We tested whether sarcopenia predicts primary colorectal cancer resection outcomes in stage II–IV patients (n=234). Sarcopenia was assessed using preoperative computed tomography images. Administrative hospitalisation data encompassing the index surgical admission, direct transfers for inpatient rehabilitation care and hospital re-admissions within 30 days was searched for International Classification of Disease (ICD)-10 codes for postoperative infections and inpatient rehabilitation care and used to calculate length of stay (LOS). Results: Overall, 38.9% were sarcopenic; 16.7% had an infection and 9.0% had inpatient rehabilitation care. Length of stay was longer for sarcopenic patients overall (15.9±14.2 days vs 12.3±9.8 days, P=0.038) and especially in those ⩾65 years (20.2±16.9 days vs 13.1±8.3 days, P=0.008). Infection risk was greater for sarcopenic patients overall (23.7% vs 12.5% P=0.025), and especially those ⩾65 years (29.6% vs 8.8%, P=0.005). Most (90%) inpatient rehabilitation care was in patients ⩾65 years. Inpatient rehabilitation was more common in sarcopenic patients overall (14.3% vs 5.6% P=0.024) and those ⩾65 years (24.1% vs 10.7%, P=0.06). In a multivariate model in patients ⩾65 years, sarcopenia was an independent predictor of both infection (odds ratio (OR) 4.6, (95% confidence interval (CI) 1.5, 13.9) P

Purpose To determine whether elements of a standard nutritional screening assessment are independently prognostic of survival in patients with advanced cancer. Patients and Methods A prospective nested cohort of patients with metastatic cancer were accrued from different units of a Regional Palliative Care Program. Patients completed a nutritional screen on admission. Data included age, sex, cancer site, height, weight history, dietary intake, 13 nutrition impact symptoms, and patient- and physician-reported performance status (PS). Univariate and multivariate survival analyses were conducted. Concordance statistics (c-statistics) were used to test the predictive accuracy of models based on training and validation sets; a c-statistic of 0.5 indicates the model predicts the outcome as well as chance; perfect prediction has a c-statistic of 1.0. Results A training set of patients in palliative home care (n = 1,164) was used to identify prognostic variables. Primary disease site, PS, short-term weight change (either gain or loss), dietary intake, and dysphagia predicted survival in multivariate analysis (P < .05). A model including only patients separated by disease site and PS with high c-statistics between predicted and observed responses for survival in the training set (0.90) and validation set (0.88; n = 603). The addition of weight change, dietary intake, and dysphagia did not further improve the c-statistic of the model. The c-statistic was also not altered by substituting physician-rated palliative PS for patient-reported PS. Conclusion We demonstrate a high probability of concordance between predicted and observed survival for patients in distinct palliative care settings (home care, tertiary inpatient, ambulatory outpatient) based on patient-reported information.

Purpose BCIRG 001 demonstrated prolonged disease-free (DFS) and overall survival (OS) but increased toxicity for adjuvant docetaxel, doxorubicin, and cyclophosphamide (TAC) versus 5-fluorouracil, doxorubicin, cyclophosphamide (FAC) in women with node positive breast cancer (BC). This study evaluates quality-adjusted survival and cost-effectiveness of adjuvant TAC versus FAC, taking downstream decisions and events into account, including palliative chemotherapy with taxanes. Methods We developed a Markov model for a cohort of women with node positive BC eligible for adjuvant anthracyclines. Data input included clinical and resource utilization data collected prospectively from BCIRG 001. Treatment decisions and outcomes with disease recurrence were based on a systematic literature review with validity reviewed by a national panel of Canadian BC oncologists. Direct costs for resource utilization following Canadian practice patterns were included. Unit costs were obtained from provincial cost list and published drug list prices. Utility scores were derived from the literature. An incremental cost-effectiveness ratio (ICER) in cost per quality-adjusted life-years (QALY) gained for TAC versus FAC was calculated. Results For 1,000 women with node positive BC, the model showed that TAC would lead to a gain of 313 QALY (370 life years) at an additional cost of $5.8 Million Canadian dollars (Cdn) compared to FAC, over a 10-year time horizon. The ICER of TAC versus FAC was $18,505.54 Cdn per QALY gained. Sensitivity analyses supported the robustness of the model. By one-way sensitivity analyses of over 50 model variables, 95% of the cumulative ICER variation was from $6,000 to $28,000 Cdn/QALY. By multivariate Monte Carlo simulation, there was a 70% probability that the ICER would be under $50,000 CdN/QALY. Conclusion For women with node positive BC, TAC improves DFS and OS compared to FAC and is a cost-effective adjuvant chemotherapy strategy.

Objective The objective of this study was to provide a detailed comparative microcosting analysis for two cancer treatment pathways to contribute evidence for resource allocation and operational decision-making in a Canadian cancer care context. Methods We estimated direct medical costs (in 2004 CAN$) of the entire pathway of care for diffuse large B-cell lymphoma (DLBCL) patients in a large Canadian cancer treatment center. Patient samples were defined as those who received R-CHOP (rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone; n=85) or CHOP (i.e., without rituximab; n=86) as first-line treatment. All subsequent treatments including palliative care for these patient samples were assessed. Hospitalization costs and unit costs of medical resources were collected from integrated medical organizations. Individual patient resource consumption was assessed via medical chart review. Results For first-line treatment, drug cost was the largest contributor to total cost, followed by hospitalization cost. Rituximab was the largest contributor to mean cost differences between R-CHOP and CHOP treatments. For treatments subsequent to first-line treatment, no significant cost differences were found. Hospitalization and transplantation costs were the two largest constituents of total costs subsequent to first-line treatment, followed by drug cost. Patients with advanced stage disease cost significantly more than patients with limited stage disease. Conclusion This is the first detailed microcosting study that has employed consistent local data to estimate total medical costs for DLBCL patients in Canada. This information is useful for resource allocation planning and operational decisions, because it provides more substantive, relevant evidence as compared to aggregated, literature or extrapolated information.

Palliative care developed unevenly in Edmonton in the 1980s and early 1990s. Health care budget cuts created an opportunity for innovative redesign of palliative care service delivery. This report describes the components that were developed to build an integrated comprehensive palliative care program, the use of common clinical assessments and outcome evaluation that has been key to establishing credibility and ongoing support. Our program has continued to develop and grow with an ongoing focus on the core areas of clinical care, education, and research.

BACKGROUND: Lung cancer is the leading cause of cancer morbidity and mortality. In addition, lung cancer has a significant economic impact on society.OBJECTIVE: To present an economic analysis of the actual care costs of lung cancer which will allow comparison with, and verification of, cost estimates that were developed through modelling and opinion.METHODS: A chart review was conducted of incident cases (circa 1998) of primary bronchogenic lung cancer. Cases were censored at two years from the date of diagnosis. Relevant clinical and health utilization data were collected. Health utilization data included hospital and institutional outpatient (ie, ambulatory clinic) costs. Cost estimates were derived for over 200 specific health services. The present analysis was performed from the economic perspective of the health care institution.RESULTS: A total of 13,389 health service events were captured with an estimated total cost of $8.4 million. Laboratory tests, diagnostic imaging and ambulatory visits constituted 86% of the service events while patient admissions and therapy constituted 76% of the costs. The vast majority of overall costs occurred just before, or within, three months of diagnosis. The median nonsmall cell lung cancer and small cell lung cancer case costs were $10,928 (range $9,234 to $11,047) and $15,350 (range $13,033 to $21,436), respectively.CONCLUSION: The results agree with the literature that the majority of lung cancer case costs are realized around the date of diagnosis (ie, early phase). The present study illustrates Canadian health care system lung cancer case costs based on actual care received versus hypothetical care algorithms.

Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death.The study objective was to examine the place of care in the last 30 days of life.In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort.After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care.Examining place of care in the last month can effectively illustrate the service use trajectory over time.

This article reviews the progress Canada has made integrating palliative care into oncologic practice. Key clinical practice guidelines (CPGs) have influenced and have been translated into Canadian oncology policy and operations. Comprehensive accreditation standards exist to guide oncology practice in institutional and ambulatory care settings. Common barriers and challenges are discussed: education and attitudes, compassion fatigue, terminology, paucity of research, aggressive cancer care, and organization and operational considerations. As a result, eight made-in-Canada innovations emerged and are described. Lessons learned and recommendations describe a plan for action.