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Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers’ experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O’Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers’ experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referra...

The use of patient-reported outcomes (PROs) for routine cancer distress screening is endorsed globally as a quality-care standard. However, there is little research on the integration of PROs in “real-world” oncology practices using implementation science methods. The Improving Patient Experience and Health Outcome Collaborative (iPEHOC) intervention was established at multisite disease clinics to facilitate the use of PRO data by clinicians for precision symptom care. The aim of this study was to examine if patients exposed to the intervention differed in their healthcare utilization compared with contemporaneous controls in the same time frame. We used a PRE- and DURING-intervention population cohort comparison study design to estimate the effects of the iPEHOC intervention on the difference in difference (DID) for relative rates (RR) for emergency department (ED) visits, hospitalizations, psychosocial oncology (PSO), palliative care visits, and prescription rates for opioids and antidepressants compared with controls. A small significantly lower Difference in Difference (DID) (− 0.223) in the RR for ED visits was noted for the intervention compared with controls over time (0.947, CI 0.900–0.996); and a DID (− 0.0329) for patients meeting ESAS symptom thresholds (0.927, CI 0.869–0.990). A lower DID in palliative care visits (− 0.0097), psychosocial oncology visits (− 0.0248), antidepressant prescriptions (− 0.0260) and an increase in opioid prescriptions (0.0456) in the exposed population compared with controls was also noted. A similar pattern was shown for ESAS as a secondary exposure variable. Facilitating uptake of PROs data may impact healthcare utilization but requires examination in larger scale “real-world” trials.

Hospitals play an important role in the care of patients with advanced cancer: nearly half of all cancer deaths occur in acute-care settings. The need for increasing access to palliative care and related support services for patients with cancer in acute-care hospitals is therefore growing. Here, we examine how often and how early in their illness patients with cancer might be receiving palliative care services in the 2 years before their death in an acute-care hospital in Canada. The palliative care code from inpatient administrative databases was used as a proxy for receiving, or being referred for, palliative care. Currently, the palliative care code is the only data element routinely collected from patient charts that allows for the tracking of palliative care activity at a pan-Canadian level. Our findings suggest that most patients with cancer who die in an acute-care hospital receive a palliative designation; however, many of those patients are identified as palliative only in their final admission before death. Of the patients who received a palliative designation before their final admission, nearly half were identified as palliative less than 2 months before death. Findings signal that delivery of services within and between jurisdictions is not consistent, that the palliative care needs of some patients are being missed by physicians, and that palliative care is still largely seen as end-of-life care and is not recognized as an integral component of cancer care. Measuring the provision of system-wide palliative care remains a challenge because comprehensive national data about palliative care are not currently reported from all sectors. To advance measurement and reporting of palliative care in Canada, attention should be focused on collecting comparable data from regional and provincial palliative care programs that individually capture data about palliative care delivery in all health care sectors.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Background: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial. Methods: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC. Results: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all PPConclusions: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged. ClinicalTrials.gov identifier: NCT04044040.

The use of patient-reported outcomes (PROs) for routine cancer distress screening is endorsed globally as a quality-care standard. However, there is little research on the integration of PROs in "real-world" oncology practices using implementation science methods. The Improving Patient Experience and Health Outcome Collaborative (iPEHOC) intervention was established at multisite disease clinics to facilitate the use of PRO data by clinicians for precision symptom care. The aim of this study was to examine if patients exposed to the intervention differed in their healthcare utilization compared with contemporaneous controls in the same time frame.We used a PRE- and DURING-intervention population cohort comparison study design to estimate the effects of the iPEHOC intervention on the difference in difference (DID) for relative rates (RR) for emergency department (ED) visits, hospitalizations, psychosocial oncology (PSO), palliative care visits, and prescription rates for opioids and antidepressants compared with controls.A small significantly lower Difference in Difference (DID) (- 0.223) in the RR for ED visits was noted for the intervention compared with controls over time (0.947, CI 0.900-0.996); and a DID (- 0.0329) for patients meeting ESAS symptom thresholds (0.927, CI 0.869-0.990). A lower DID in palliative care visits (- 0.0097), psychosocial oncology visits (- 0.0248), antidepressant prescriptions (- 0.0260) and an increase in opioid prescriptions (0.0456) in the exposed population compared with controls was also noted. A similar pattern was shown for ESAS as a secondary exposure variable.Facilitating uptake of PROs data may impact healthcare utilization but requires examination in larger scale "real-world" trials.

Measuring performance for palliative care is complex as care is delivered in many sites, over time and jointly to the patient and family. Measures of structural processes do not necessarily capture aspects that are important to patients and families nor reflect holistic multidisciplinary outcomes of care. This article focuses on the question as to whether measurement of patient-reported outcome measures improves the outcomes of quality and access to palliative care.To review the international evidence that measurement of indicators of desired outcomes improves the quality of and access to palliative care, in order to apply them to the Canadian context.Rapid review.Canadian context.This review identified six systematic reviews and forty-seven studies that describe largely national efforts to arrive at a consensus as to what needs to be measured to assess quality of palliative care. Patient-reported outcome measures (PROMs) are becoming more prevalent, with emerging evidence to suggest that their measurement improves outcomes that are important to patients. Several Canadian initiatives are in place, including the Canadian Partnership Against Cancer's efforts, in conjunction with other partners, to develop common quality measures. Results from Australia's Palliative Care Outcomes Collaborative demonstrate that patient-centered improvements in palliative care can be measured by using patient-reported outcomes derived at the point of care and delivered nationally.Measurement of quality palliative and end-of-life care is very complex. It requires that both administrative data and PROMs be assessed to reflect outcomes that are important to patients and families. Australia's national initiative is a promising exemplar for continued work in this area.

The discipline of palliative medicine in Canada started in 1975 with the coining of the term “palliative care.” Shortly thereafter, the provision of clinical palliative medicine services started, although the education of the discipline lagged behind. In 1993, the Canadian Society of Palliative Care Physicians (CSPCP) started to explore the option of creating an accredited training program in palliative medicine. This article outlines the process by which, over the course of 20 years, palliative medicine training in Canada went from a mission statement of the CSPCP, to a 1 year of added competence jointly accredited by both the Royal College of Physicians and Surgeons of Canada (Royal College) and the College of Family Physicians of Canada, to a 2-year subspecialty of the Royal College with access from multiple entry routes and a formalized accrediting examination.

Acute care hospitals have a role in managing the health care needs of people affected by cancer when they are at the end of life. However, there is a need to provide end-of-life care in other settings, including at home or in hospice, when such settings are more appropriate. Using data from 9 provinces, we examined indicators that describe the current landscape of acute care hospital use at the end of life for patients who died of cancer in hospital in Canada. Interprovincial variation was observed in acute care hospital deaths, length of stay in hospital, readmission to hospital, and intensive care unit use at the end of life. High rates of acute care hospital use near the end of life might suggest that community and home-based end-of-life care might not be suiting patient needs.

11604 Background: Routine early palliative care (EPC) by specialized teams improves quality of life for patients with advanced cancer, but may not be scalable. To plan for a larger randomized controlled trial, we conducted a phase 2 trial of STEP, a novel intervention of targeted EPC based on symptom screening. Methods: Participants with advanced cancer, ECOG 0-2, and clinical prognosis ≥6 months were recruited from lung, gastrointestinal, genitourinary, breast and gynecology outpatient clinics. Symptoms were screened at every outpatient visit using the Edmonton Symptom Assessment System-revised (ESAS-r). Moderate to severe symptom scores (≥4/10 for pain, nausea, dyspnea, depression, anxiety; ≥7/10 for fatigue, appetite, drowsiness, well-being) triggered an e-mail to a nurse, who called the patient, offering an EPC visit. Participants completed outcome measures at baseline, 2, 4 and 6 months (primary endpoint). Trial feasibility criteria were: i) ≥100 patients accrued in 12 months; ii) ≥70% complete screening for ≥70% of visits; iii) ≥60% of those for whom a call is triggered meet at least once with the EPC team; iv) ≥60% complete measures at each endpoint. Results: From 11/2016-1/2018, 116 patients were enrolled; 89/116 (77%) completed screening for ≥70% of visits and 59% (69/116) received a call triggered by symptoms. Of those receiving a call, 62% (43/69) received EPC; 3 further patients were referred by their oncologist. Measure completion was 79% (81/116) at 2, 61% (71/116) at 4, and 57% (66/116) at 6 months. By trial end (6 months), patients who received a call and accepted EPC involvement had better symptom control (ESAS-r-CS mean change in those receiving vs. deferring EPC: -0.07±16.9 vs 11.8±13.7, p = 0.02) and less deterioration in mood (PHQ-9: -0.4±3.4 vs 2.6±2.3, p = 0.003). There was no difference between those receiving versus deferring EPC in quality of life (FACIT-Sp: -4.7±13.6 vs -3.2±15.4, p = 0.75; QUAL-E: -2.6±8.4 vs -1.5±11.0, p = 0.62), or satisfaction with care (FAMCARE-P-16: -3.2±7.9 vs -3.5±6.1, p = 0.79). Conclusions: STEP is feasible in patients with advanced cancer. More than half of patients have moderate to severe symptoms, and acceptance of the triggered EPC visit should be encouraged.

Context Understanding the longitudinal transitions of performance status among persons with cancer can assist providers in determining the appropriate time to initiate palliative care support. Objectives To model longitudinal transitions of performance status in cancer outpatients, to determine the probabilities of improvement and deterioration in performance status over time, and to evaluate the factors associated with rates of transitions. Methods This population-based, retrospective, cohort study comprised adult outpatients diagnosed with any type of cancer and assessed for performance status throughout their observation period using the Palliative Performance Scale (PPS; scale 0–100; 0 indicates death). At every PPS assessment, patients were assigned to one of four states: stable state (PPS score 70–100), transitional state (PPS score 40–60), end-of-life state (PPS score 10–30), or dead. A Markov multistate model under the presence of interval censoring was used to examine the rate of state-to-state transitions. Results There were 11,374 patients representing nearly 71,000 assessments. Patients with lung cancer in the transitional state had a 27.7% chance of being dead at the end of one month vs. 17.5% in patients with breast cancer. The average time spent in the transitional state was 6.6 weeks for patients diagnosed with gastrointestinal cancer vs. 8.8 weeks for patients with breast cancer. The rate at which one moves from the transitional state to death was higher for patients with lung cancer than those with breast cancer. Conclusion We estimated the probability and direction of change in performance status in cancer outpatients. Entry into the transitional state may serve as an indicator for referral for palliative care support. Mean end-of-life sojourn times are too short to allow meaningful integration of palliative care.

Previous studies have reported survival estimates in palliative populations using the Palliative Performance Scale (PPS) (where 100=best status, 0=death). However, little research has examined the association of the PPS with hazard of death in ambulatory populations.We examined the association between performance status and the instantaneous hazard of death in ambulatory cancer patients, using longitudinal PPS scores.This retrospective, population-based cohort study included cancer outpatients who had at least one PPS assessment completed between 2007 and 2009. PPS scores were recorded opportunistically by health care providers at clinic or home care visits. We used a Cox proportional hazards model to determine the relative hazard of death based on repeated measures of PPS score, while controlling for other covariates.Among 11,342 qualifying cancer patients, there were 54,207 PPS assessments. The distribution of PPS scores at first assessment were 23%, 56%, 20%, and 1% for PPS scores of 100, 90-70, 60-40, and ≤ 30, respectively. A quarter of the cohort died within 6 months of the first assessment. The relative hazard of death increases by a factor of 1.69 (95% confidence interval [CI]: 1.72-1.67) for each 10-point decrease in PPS score. Thus the hazard of death increases by 8.2 (1.69(4)) times for a person with PPS score of 30 compared with a person with a score of 70.The PPS was significantly associated with hazard of death in ambulatory cancer patients; the relative hazard of death increased based on lowered PPS scores. Providers should consider broadening its use to include patients throughout their disease trajectory.

Purpose Ontario's cancer system is unique because it has implemented two standardized assessment tools population-wide to improve care: the Edmonton Symptom Assessment System (ESAS) measures severity of nine symptoms (scale 0 to 10; 10 indicates the worst) and the Palliative Performance Scale (PPS) measures performance status (scale 0 to 100; 0 indicates death). This article describes the trajectory of ESAS and PPS scores 6 months before death. Patients and Methods Observational cohort study of cancer decedents between 2007 and 2009. Decedents required ≥1 ESAS or PPS assessment in the 6 months before death for inclusion. Outcomes were the decedents' average ESAS and PPS scores per week before death. Results Ten thousand seven hundred fifty-two (ESAS) and 7,882 (PPS) decedents were included. The mean age was 65 years, half were female, and approximately 75% of assessments occurred in cancer clinics. Average PPS score declined slowly over the 6 months before death, starting at approximately 70 and ending at 40, declining more rapidly in the last month. For ESAS symptoms, average pain, nausea, anxiety, and depression scores remained relatively stable over the 6 months. Conversely, shortness of breath, drowsiness, well-being, lack of appetite, and tiredness increased in severity over time, particularly in the month before death. More than one third of the cohort reported moderate to severe scores (ie, 4 to 10) for most symptoms in the last month of life. Conclusion In this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns: increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions) for those symptoms. Future research should prioritize addressing symptoms that worsen over time.

Background: Acute-care hospitals have a role in managing the needs of people with cancer when they are at the end-of-life; however, overutilization of hospital care at the end-of-life results in poorer quality of life and can worsen the patient's experience. Early integration of comprehensive palliative care can greatly reduce unplanned visits to the emergency department, reduce avoidable admissions to hospital, shorten hospital stays, and increase the number of home deaths as well as improve the quality of life of patients with advanced cancer. Aim: To describe the current landscape of acute-care hospital utilization near the end-of-life across Canada and indirectly examine access to palliative care in cancer patients who die in hospital. Methods: Data were obtained from the Canadian Institute for Health Information. The analysis was restricted to adults aged 18+ who died in an acute care hospital in 2014/15 and 2015/16 for nine provinces and three territories. The Discharge Abstract Database was used to extract acute-care cancer death abstracts. Data on intensive care unit (ICU) admissions includes only facilities that report ICU data. Results: Acute care utilization at end-of-life remains commonplace. In Canada (excluding Québec), 43% (48,987) of deaths from cancer occurred in acute-care hospitals, with 70% admitted through the emergency department (ED). In the last six months of life, cancer patients dying in hospital had a median cumulative length of stay ranging from 17 to 25 days, depending on the province. Between 18.1% and 32.8% of patients experienced two or more admissions to the hospital in the last month of life. The proportion of cancer patients admitted to the ICU in the last 14 days of life ranged from 6.4% to 15.1%. Patient demographics (age, sex, place of residence) and clinical factors (cancer type) were often predictors of hospital utilization at end-of-life and likely point to inequities in access to palliative and end-of-life care. Conclusion: Despite previous patient surveys indicating that patients would prefer to receive care and spend their finals days at home or in a hospice, there appears to be overuse of and overreliance on acute care hospital services near the end-of-life in Canada. The high rates of hospital deaths and admissions through the ED at the end-of-life for cancer patients may signal a lack of planning for impeding death and inadequate availability of or access to community- and home-based palliative and end-of-life care services. Acute care hospitals may have a role in managing the health care needs of people affected by cancer; however, end-of-life care should be an option in other settings that align with patient preferences. Standards or practice guidelines to identify, assess and refer patients to palliative care services earlier in their cancer journey should be developed and implemented to ensure optimal quality of life.

The delivery of optimal palliative care requires an integrated and coordinated approach of many health care providers across the continuum of care. In response to identified gaps in the region, the Palliative Care Integration Project (PCIP) was developed to improve continuity and decrease variability of care to palliative patients with cancer. The infrastructure for the project included multi-institutional and multisectoral representation on the Steering Committee and on the Development, Implementation and Evaluation Working Groups. After review of the literature, five Collaborative Care Plans and Symptom Management Guidelines were developed and integrated with validated assessment tools (Edmonton Symptom Assessment System and Palliative Performance Scale). These project resources were implemented in the community, the palliative care unit, and the cancer center. Surveys were completed by frontline health professionals (defined as health professionals providing direct care), and two independent focus groups were conducted to capture information regarding: 1) the development of the project and 2) the processes of implementation and usefulness of the different components of the project. Over 90 individuals from more than 30 organizations were involved in the development, implementation, and evaluation of the PCIP. Approximately 600 regulated health professionals and allied health professionals who provided direct care, and over 200 family physicians and medical residents, received education/training on the use of the PCIP resources. Despite unanticipated challenges, frontline health professionals reported that the PCIP added value to their practice, particularly in the community sector. The PCIP showed that a network in which each organization had ownership and where no organization lost its autonomy, was an effective way to improve integration and coordination of care delivery.

Purpose In 1998, the American Society of Clinical Oncology (ASCO) published a special article regarding palliative care and companion recommendations. Herein we summarize the major accomplishments of ASCO regarding palliative cancer and highlight current needs and make recommendations to realize the Society's vision of comprehensive cancer care by 2020. Methods ASCO convened a task force of palliative care experts to assess the state of palliative cancer care in the Society's programs. We reviewed accomplishments, assessed current needs, and developed a definition of palliative cancer. Senior ASCO members and the Board of Directors reviewed and endorsed this article for submission to Journal of Clinical Oncology. Results Palliative cancer care is the integration into cancer care of therapies that address the multiple issues that cause suffering for patients and their families and impact their life quality. Effective provision of palliative cancer care requires an interdisciplinary team that can provide care in all patient settings, including outpatient clinics, acute and long-term care facilities, and private homes. Changes in current policy, drug availability, and education are necessary for the integration of palliative care throughout the experience of cancer, for the achievement of quality improvement initiatives, and for effective palliative cancer care research. Conclusion The need for palliative cancer care is greater than ever notwithstanding the strides made over the last decade. Further efforts are needed to realize the integration of palliative care in the model and vision of comprehensive cancer care by 2020.

This study evaluated the effectiveness of implementation of common assessment tools, collaborative care plans, and symptom management guidelines for cancer patients as a strategy to improve the quality, coordination, and integration of palliative care service across organizations and health care sectors. A pre-post design to measure the impact on symptom management, caregiver burden and satisfaction with care delivery, and service utilization was used. Two cohorts of eligible patients and caregivers completed Edmonton Symptom Assessment Scales, Caregiver Reaction Assessment and FAMCARE Scales and chart audits were conducted. Administrative data from each participating site were examined for utilization trends. Audits of 53 charts preimplementation and 63 postimplementation showed an increase in documentation of pain from 24.5% to 74.6% (P

High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COPD. The joint American Thoracic Society (ATS)/European Respiratory Society (ERS) statement “An official American Thoracic Society/European Respiratory Society statement: research questions in COPD” by Celli et al. [1] is a timely summary of the current evidence and the questions that arise directly from where that evidence reaches its limits. Such documents are crucial in framing research strategies for researchers and research funders.

Ontario, a Canadian province, identified the lack of coordination, integration, and consistency of end-of-life care services as barriers to quality palliative care. To address these barriers, various governmental, organizational, and community-level initiatives were implemented. The Ministry of Health and Long-Term Care enacted an End-of-Life Care Strategy in 2005 aimed at shifting care from acute settings to appropriate alternate settings of care; enhancing client-centered and interdisciplinary service capacity; and improving access, coordination, and consistency of services. Crucial to accomplishing the strategy was the establishment of End-of-Life Networks within health care planning regions. The networks were instrumental in developing end-of-life care service delivery models in the various regions, bringing key stakeholders together toward a common vision, and building strong collaborations across providers and settings. Cancer Care Ontario, an organization dedicated to improving cancer care at the regional and provincial levels, also leads improvements in palliative care through the implementation of a palliative strategy for cancer patients aimed at improved measurement of quality indicators, increased use of evidence and standards, and increased efficiency and access to care. A regional network of organizations in Southeastern Ontario created a quality improvement project, the Palliative Care Integration Project (PCIP), which disseminated common symptom assessment tools, collaborative care plans, and evidence-based guidelines across the continuum of care. The PCIP was embraced by key stakeholders across the province as a model intervention to better coordinate, integrate, and standardize palliative care service delivery, and is currently being spread across all regions of the province.

Few studies have evaluated sex differences in the prevalence, severity, and correlates of fatigue at the end of life. The Brief Fatigue Inventory, McGill Quality of Life (MQOL) Questionnaire, and Karnofsky Performance Scale were administered at two-week intervals to 102 patients in a home palliative program. Outcomes in the sample and a regional palliative database (n=3,096) were analyzed. Cancer was the diagnosis in 96% of patients enrolled. Prevalence (P=0.0091) and severity of fatigue (P0.001) were higher in women at entry and in a repeated measures analysis over time (severity, P=0.0048). Performance status did not explain this difference. MQOL scores were inversely correlated to fatigue (Spearman coefficient=-0.48, P0.0001), but did not differ by sex. There was no difference in fatigue interference with MQOL in women and men. Although depression was higher in women (P=0.042) and related to fatigue at entry, it did not explain the sex difference in fatigue scores. Of the sociodemographic variables examined, neither education nor living situation contributed to the fatigue difference. This study shows a sex effect in the fatigue experienced by patients with advanced illnesses, which is not explained by baseline differences in performance, depression, MQOL, education, or living situation. That fatigue interference with MQOL is the same for men and women suggests that higher fatigue scores in women reflect not only a difference in the dimension of fatigue severity, but are also relevant in relation to impact on QOL. Assessment of fatigue should include the dimension of QOL important for both women and men.

Objective: Practice guidelines indicate that patients who have months to weeks left to live should not be offered chemotherapy. We examined factors associated with clinician-reported poor performance status as determined by the Palliative Performance Scale (PPS) and subsequent initiation of intravenous (IV) chemotherapy in an ambulatory cancer population in Ontario, Canada. Methods: In this retrospective study, patients who had at least one PPS assessment indicating poor performance status (a PPS score of 50 or lower) comprised the study cohort. Using linked administrative databases, we observed the cohort for initiation of IV chemotherapy within 30 days of the first (index) poor PPS assessment. Results: We excluded patients for whom IV or oral chemotherapy was on going or recently completed or whose performance status improved following the index assessment. Of the remaining cohort, 9.3 percent (264/2,842) received IV chemotherapy within 30 days of the index PPS. Conclusion: A small number of cancer patients with poor performance status began IV chemotherapy in the month following assessment. Objectif: Les directives de pratiques cliniques recommandent que l'on ne propose pas de traitements de chimiothérapie aux patients présentant une espérance de survie de quelques semaines à quelques mois. Nous avons examiné, chez un groupe de patients atteints du cancer en Ontario, au Canada, les éléments associés au faible statut des malades selon les paramètres de l'Έchelle de performance pour soins palliatifs afin d'identifier les facteurs qui ont déterminé l'amorce de la chimiothérapie. Méthode: Cette étude rétrospective comprenait les patients chez qui lors du test d'évaluation de performance on avait noté au moins un élément négatif, soit un score de performance de 50 ou moins. En utilisant plusieurs banques de données administratives interreliées, nous avons étudié cette cohorte de patients devant être traités par chimiothérapie au cours de la période de 30 jours suivant leur évaluation. Résultats: Nous avons exclu les patients pour lesquels le traitement de chimiothérapie orale ou intraveineuse était déjà en cours ou récemment terminé ou ceux dont le statut s'était amélioré selon l'Έchelle de performance. De la partie restante de la cohorte, 9,3 pourcent (264/2 842) ont reçu le traitement par voie intraveineuse à l'intérieur des 30 jours suivant l'indice de l'Έchelle de performance. Conclusion: Un petit nombre de patients ayant un faible statut ont commencé la traitement de chimiothérapie au cours du mois suivant l'évaluation.

To ensure quality of care, palliative care programs need to document the effectiveness of their relief of physical and psychological distress. The Edmonton Symptom Assessment Scale (ESAS) is a validated, reliable instrument developed to measure 9 different symptoms in palliative care patients. To see if symptom management could be compared across institutions, we first reviewed the charts of 188 successive admissions to the palliative care unit at St. Boniface General Hospital, Winnipeg, Manitoba. Our study showed that the ESAS is a useful audit tool for assessing patterns of palliative symptom control that allows for institutional comparisons. Procedures that ensure completeness of data collection remain to be developed.

This cross-sectional study compared the prevalence and intensity of needs expressed by cancer patients at the time of first recurrence (n=75) with those of patients at the time of disease progression (n=75). On a 72-item Likert-type scale participants rated from “none” to “very much” the severity of physical symptoms; emotional, psychological, and social problems; and difficulties with activities of daily living. The progressive disease group reported more problems than the first recurrence group in 11 of 24 (47%, p

Context The Provincial Palliative Care Integration Project (PPCIP) was implemented in Ontario, Canada, to enhance the quality of palliative care delivery. The PPCIP promoted collaboration and integration across service sectors to improve screening and assessment, palliative care processes, as well as clinician practice and outcomes for cancer patients. Objectives The project involved 1) implementation of the Edmonton Symptom Assessment System (ESAS) for symptom screening, 2) use of "rapid-cycle change" quality improvement processes to improve screening and symptom management, and 3) improvements in integration and access to palliative care services. Methods Symptom scores were collected and made accessible to the care team through a web-based tool and kiosk technology, which helped patients enter their ESAS scores at each visit to the regional cancer center or at home with their nurse. Symptom response data were gathered through clinical chart audits. Results Within one year of implementation, regional cancer centers saw improvements in symptom screening (54% of lung cancer patients), symptom control (69% of patients with pain scores and 31% of patients with dyspnea scores seven or more were reduced to six or less within 72 hours), and functional assessment (23% of all patients and 64% of palliative care clinic patients). ESAS screening rates reached 29%, and functional assessment reached 26% of targeted home care patients. Conclusion The PPCIP demonstrated that significant strides in symptom screening and response can be achieved within a year using rapid-cycle change and collaborative approaches. It showed that both short- and long-term improvement require ongoing facilitation to embed the changes in system design and change the culture of clinical practice.

BACKGROUND. For ambulatory cancer patients, Ontario has standardized symptom and performance status assessment population-wide, using the Edmonton Symptom Assessment System (ESAS) and Palliative Performance Scale (PPS). In a broad cross-section of cancer outpatients, the authors describe the ESAS and PPS scores and their relation to patient characteristics. METHODS. This is a descriptive study using administrative healthcare data. RESULTS. The cohort included 45,118 and 23,802 patients’ first ESAS and PPS, respectively. Fatigue was most prevalent (75%), and nausea least prevalent (25%) in the cohort. More than half of patients reported pain or shortness of breath; about half of those reported moderate to severe scores. Seventy-eight percent had stable performance status scores. On multivariate analysis, worse ESAS outcomes were consistently seen for women, those with comorbidity, and those with shorter survivals from assessment. Lung cancer patients had the worst burden of symptoms. CONCLUSIONS. This is the first study to report ESAS and PPS scores in a large, geographically based cohort with a full scope of cancer diagnoses, including patients seen earlier in the cancer trajectory (ie, treated for cure). In this ambulatory cancer population, the high prevalence of numerous symptoms parallels those reported in palliative populations and represents a target for improved clinical care. Differences in outcomes for subgroups require further investigation. This research sets the groundwork for future research on patient and provider outcomes using linked administrative healthcare data. Cancer 2010;116:5767–76. V C 2010 American Cancer Society.

Purpose To construct empirically a conversion table to convert performance status scores among the Eastern Cooperative Oncology Group (ECOG), Karnofsky Performance Status (KPS) and Palliative Performance Scale (PPS) measures, using a large sample of patients with advanced cancer. Methods Seven physicians completed assessments on 1385 consecutive patients attending an oncology palliative care clinic, or admitted to an acute cancer palliative care unit. The three measures were distributed as a questionnaire package; the order in which they were presented was randomly assigned for each week. Scales were compared using the hit rate and the weighted kappa coefficient ( κ w ). The KPS and PPS were compared directly; for comparisons of either scale with the ECOG, all 70 possible categorisations of KPS and PPS were computed. An ‘ideal’ categorisation was selected based on maximisation of both statistical methods. Results The KPS and PPS matched in 1209 out of 1385 assessments (hit rate 87%; κ w 0.97). For both the KPS and the PPS, the categorisation of 100 (ECOG 0), 80–90 (1), 60–70 (2), 40–50 (3), 10–30 (4) had the highest hit rate (75%), and the second highest κ w (0.84, p κ w (0.85 for both KPS and PPS), but a lower hit rate (73% for KPS, 72% for PPS). Conclusions We have derived empirically a conversion scale among the ECOG, KPS and PPS scales. The proposed scale provides a means of translating amongst these measures, which may improve accuracy of communication about performance status amongst oncology clinicians and researchers.

The treatment of incident pain in terminally ill cancer patients receiving long-term opioid therapy remains a challenge. Self-administered inhaled nitrous oxide has been used for short-term analgesia in this setting, with mixed results. It is unclear whether nitrous oxide exhibits cross-tolerance with opioids, and there is the possibility of a strong placebo effect in previous unblinded reports. We report on a double-blind crossover case series, in which seven patients received either nitrous oxide/oxygen or a placebo air/oxygen mixture on each day of a two-day trial. Outcome indices were obtained before, during and after each use of the gas for anticipated incident pain. The patient population was very heterogeneous with respect to disease, pain scores and concurrent treatments. Nitrous oxide was beneficial during incidents in five of seven patients; the remaining two patients reported an overall preference for the nitrous oxide day. We conclude that a trial of self-administered inhaled nitrous oxide should be considered in patients with difficult incident pain.

Dyspnea, like pain, is a subjective experience that incorporates physical elements and affective components. Management of breathlessness in patients with cancer requires expertise that includes an understanding and assessment of the multidimensional components of the symptom, knowledge of the pathophysiologic mechanisms and clinical syndromes that are common in cancer, and familiarity with the indications and limitations of the available therapeutic approaches. Relief of breathlessness should be the goal of treatment at all stages of cancer. Good control of dyspnea will improve the patient's quality of life.

56 Background: The goal of the collaborative is to improve the quality and consistency of physical and emotional symptom management across the cancer journey. Objectives are: (a) promote the adoption of electronic symptom assessment using a standardized tool and (b) increase the clinical use of evidence based guidelines to effectively manage patient identified symptoms. Methods: The actions taken for this initiative are to manage cancer symptoms through a patient reported measurement tool; improve the quality of symptom management through the uptake of symptom management guides and algorithms for care; and drive improvement through the adoption of an electronic symptom assessment platform The following aims were established for this work: (1) Aim for symptom screening and assessment (70% of ambulatory cancer clinic patients are screened for symptom severity using ESAS at least once/month) (2) aim for symptom management (evidence from chart audits show intervention as per evidence based guidelines for patients reported symptom scores) (3) aim for patient satisfaction (90% of target population indicates that their health care team took their scores into consideration when developing a care plan) and (4) aim for evidence of use (90% of patients state that their doctor or nurse spoke with them about their symptom screen). Results: 60% of cancer patients are screened each month representing over 28,000 people. Six of fourteen cancer regions are above the provincial target of 70%, with some close to 90%. 92% of patients felt ESAS was important to complete to help health care providers know how they are feeling. Conclusions: Cancer Care Ontario has been able to drive improvements in symptom management through the implementation of system wide electronic symptom assessment. For other jurisdictions interested in adopting this approach, the following areas are critical for success. (a.) Leadership at all levels of the system; (b.) clinical tools at the point of care; (c) engagement of patients in the design of care; (d) communications support to spread information to all stakeholders; and (e) using to data to drive performance improvement and accountability.

The Canadian Palliative Care Education Group, a committee of the Canadian Society of Palliative Care Physicians, carries out surveys from time to time on the status of palliative care education in Canadian medical schools. We describe the organization of the Canadian Palliative Care Education Group and report on a survey carried out in the 1996–97 academic year. Our data suggest that the emphasis on palliative care varies widely amongst the 16 Canadian medical schools, in concert with the availability of academic staff positions in palliative care. We conclude that the need for palliative care education is supported by rhetoric which remains to be matched by proportionate tangible investment.

Complex biomedical and psychosocial considerations figure prominently in the debate about euthanasia and assisted suicide. No study to date, however, has examined the extent to which a dying patient's will to live fluctuates as death approaches.This study examined patients with cancer in palliative care. Will to live was measured twice daily throughout the hospital stay on a self-report 100 mm visual analogue scale. This scale was incorporated into the Edmonton symptom assessment system, a series of visual analogue scales measuring pain, nausea, shortness of breath, appetite, drowsiness, depression, sense of well-being, anxiety, and activity. Maximum and median fluctuations in will-to-live ratings, separated by 12 h, 24 h, 7 days, and 30 days, were calculated for each patient.Of 585 patients admitted to palliative care during the study period (November, 1993, to May, 1995), 168 (29%; aged 31-89 years) met criteria of cognitive and physical fitness and agreed to take part. The pattern of median changes in will-to-live score suggested that will to live was stable (median changes10 mm on 100 mm scale for all time intervals). By contrast, the average maximum changes in will-to-live score were substantial (12 h 33.1 mm, 24 h 35.8 mm, 7 days 48.8 mm, 30 days 68.0 mm). In a series of stepwise regression models carried out at 12 h, 24 h, and 1-4 weeks after admission, the four main predictor variables of will to live were depression, anxiety, shortness of breath, and sense of well-being, with the prominence of these variables changing over time.Among dying patients, will to live shows substantial fluctuation, with the explanation for these changes shifting as death approaches.

We report the analysis of a cancer management survey mailed to a representative group of health professionals in 1994. The goals of the study were to gather information on cancer pain treatment practices, and to obtain health professional views on obstacles to ideal pain management. The survey, designed by a working party of pharmacists, nurses and physicians, was distributed to 14,628 physicians. A total of 2,686 physicians responded to the survey, including 39% of medical or radiation oncologists, and 18.19% of physicians who listed their primary interest as Family Medicine. Reflecting the modest emphasis placed on palliative care and cancer pain management in the current Canadian milieu, 67% of physicians rated their past teaching experience as only "fair" or "poor." Lack of exposure to pain education was reflected in the response to a series of hypothetical case scenarios exploring physician choices in managing severe cancer pain. For example, in the initial management of a cancer patient with severe pain, 50% of physicians would not use a strong opioid in the absence of other contraindications to opioid use. A wide variety of analgesics and non-pharmacologic techniques is available to Canadian physicians to assist patients with pain. Few physicians identified the unavailability of analgesics or analgesic techniques as limiting factors in pain management. We condude that greater emphasis should be placed on pain education in our training programmes. We suggest that further surveys of this type, sponsored by our provincial colleges and medical organizations, can provide feedback which will enhance the adherence by Canadian physicians to published guidelines for pain management.

The understanding and treatment of dyspnea in the cancer patient are where the science of pain management was 15 or 20 years ago. Very few studies have examined the pathophysiologic mechanisms that cause dyspnea in cancer patients, and few investigators have evaluated therapeutic strategies to control dyspnea in this patient group. The optimal therapy for dyspnea is treatment of the underlying cause. When this is not possible, opioids and phenothiazines provide effective symptomatic relief in most cases, but many unanswered questions remain. Are these the optimal drugs, and what are their optimal doses? What are the effects of chronic dosing? Which is the best route of administration? How serious are the risks of respiratory depression? A clear consensus supports the aggressive treatment of pain in terminally ill cancer patients, even if death is hastened as an unintended consequence. No such position has yet been reached in the management of dyspnea in the same population. As a result, dyspnea is addressed only very late in the course of the disease, perhaps reducing the patient's quality of life and function at earlier stages and resulting in a very small "therapeutic window" in the terminal phase. Clearly, a need exists for more research to determine the most effective management of this common and very distressing symptom.

Our study was a pilot test of an interdisciplinary training program in palliative care to improve the quality of care to terminally ill cancer and AIDS patients in rural and northern communities in Manitoba. The program involved two weeks of intense palliative care training for nurses, social workers, physicians, and volunteers. Four teams were trained during a six-month period. A repeated measures design was used to assess the effectiveness of the program. Results indicated that health professionals’ knowledge about care of the dying, care of individuals with HIV/AIDS, and attitudes toward care of the dying improved upon completion of the training program and remained improved three months following the program. Improvements in use of medications, increased attention to family care, increased discussion of DNR orders, and increased consultation related to symptom management were evident following the training program. The parallel training program for volunteers was also judged to be effective.