The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015.

BACKGROUND: Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients' receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. METHODS: Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. RESULTS: There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). CONCLUSIONS: Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

The Impact of Socioeconomic Status on Place of Death Among Patients Receiving Home Palliative Care in Toronto, Canada: A Retrospective Cohort Study.

BACKGROUND: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities. AIM: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada. DESIGN: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death. SETTING/PARTICIPANTS: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada. RESULTS: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047). CONCLUSIONS: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.

The interaction of socioeconomic status with place of death: a qualitative analysis of physician experiences.

BACKGROUND: Home is a preferred place of death for many people; however, access to a home death may not be equitable. The impact of socioeconomic status on one's ability to die at home has been documented, yet there remains little literature exploring mechanisms that contribute to this disparity. By exploring the experiences and insights of physicians who provide end-of-life care in the home, this study aims to identify the factors perceived to influence patients' likelihood of home death and describe the mechanisms by which they interact with socioeconomic status. METHODS: In this exploratory qualitative study, we conducted interviews with 9 physicians who provide home-based care at a specialized palliative care centre. Participants were asked about their experiences caring for patients at the end of life, focusing on factors believed to impact likelihood of home death with an emphasis on socioeconomic status, and opportunities for intervention. We relied on participants' perceptions of SES, rather than objective measures. We used an inductive content analysis to identify and describe factors that physicians perceive to influence a patient's likelihood of dying at home. RESULTS: Factors identified by physicians were organized into three categories: patient characteristics, physical environment and support network. Patient preference for home death was seen as a necessary factor. If this was established, participants suggested that having a strong support network to supplement professional care was critical to achieving home death. Finally, safe and sustainable housing were also felt to improve likelihood of home death. Higher SES was perceived to increase the likelihood of a desired home death by affording access to more resources within each of the categories. This included better health and health care understanding, a higher capacity for advocacy, a more stable home environment, and more caregiver support. CONCLUSIONS: SES was not perceived to be an isolated factor impacting likelihood of home death, but rather a means to address shortfalls in the three identified categories. Identifying the factors that influence ability is the first step in ensuring home death is accessible to all patients who desire it, regardless of socioeconomic status.

Advanced lung cancer patients' experience with continuity of care and supportive care needs.

As cancer care becomes increasingly complex, the ability to coordinate this care is more difficult for health care providers, patients and their caregivers alike. Despite the widely recognized need for improving continuity and coordination of care, the relationship of continuity of care with patient outcomes has yet to be elucidated. Our study's main finding is that the Continuity and Coordination subscale of the widely used Picker System of Ambulatory Cancer Care Survey is able to distinguish between lung cancer patients with unmet supportive care needs and those without. Specifically, this study shows a new association between this widely implemented continuity and coordination survey and the 'psychological needs' domain, as well as the 'health system and information' domains of supportive care needs. The finding provides support for the idea that interventions to improve continuity may impact tangible indicators of patient care such as supportive care needs being met. The study focuses attention on continuity of care as an important aspect of optimizing outcomes in cancer care.

Modeling the longitudinal transitions of performance status in cancer outpatients: time to discuss palliative care.

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.

Opioid prescription after pain assessment: a population-based cohort of elderly patients with cancer.

PURPOSE: The purpose of this study was to measure opioid prescription (OP) rates in elderly cancer outpatients around the time of assessment for pain and to evaluate factors associated with receiving OPs for those with severe pain. PATIENTS AND METHODS: The cross-sectional cohort includes all patients with cancer in Ontario older than age 65 years who completed a pain assessment as part of a provincial initiative of systematic symptom screening. Patients were assigned to mutually exclusive categories by pain score severity: 0, 1 to 3 (mild), 4 to 6 (moderate), and 7 to 10 (severe). We linked multiple provincial health databases to examine the proportion of patients with an OP within 7 days after or 30 days before the assessment date. We examined factors associated with OPs for patients with pain scores of 7 to 10. RESULTS: The proportion of patients with an OP increased as pain score severity increased: 10% of those with no pain, 24% of those with mild pain, 45% of those with moderate pain, and 67% of those with severe pain. More specifically, for those with severe pain, 41% filled an OP within 7 days of assessment for pain, and 26% had an OP from the 30 days before assessment for pain, leaving 33% without an OP. In multivariable analysis, factors associated with OPs are younger age, male sex, comorbid illness, cancer type, and assessment at home. CONCLUSION: Despite a generous time window for capturing OPs, the proportion of patients without an OP seems high. Further knowledge translation is required to maximize the impact of the symptom screening initiative in Ontario and to optimize management of cancer-related pain.

Health system characteristics of quality care delivery: a comparative case study examination of palliative care for cancer patients in four regions in Ontario, Canada.

BACKGROUND: A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described. AIM: The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths. DESIGN: A comparative case study evaluation was conducted of 'palliative care' in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed. RESULTS: 43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services. CONCLUSIONS: The four palliative care regional 'systems' examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.

Resource use and costs of end-of-Life/palliative care: Ontario adult cancer patients dying during 2002 and 2003.

The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives--or, during the period from diagnosis to death, if briefer--in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002-2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.

Multistate analysis of interval-censored longitudinal data: application to a cohort study on performance status among patients diagnosed with cancer.

In observational studies on cancer patients, progression of performance status over time can be described by using a multistate model in which state-to-state transitions represent changes in a patient's health condition. Although a patient experiences transitions in continuous time, assessments on the patient are often made at irregularly spaced time points. In this paper, the authors formulate a Markov 4-state model for examining longitudinal data on performance status collected under intermittent observation. The cohort consisted of 11,342 patients diagnosed with cancer in Ontario, Canada, from 2007 to 2009. The authors extend the model to estimate the predicted probability of reaching the absorbing state, death, over various time intervals. The authors also illustrate what happens to the estimated transition intensities if the true observational scheme is overlooked. Methods for multistate analysis should be used by epidemiologists, since they prove particularly useful for examining the complexities of disease processes.

Symptom burden and performance status in a population-based cohort of ambulatory cancer patients.

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.

Decision making in palliative radiation therapy: reframing hope in caregivers and patients with brain metastases.

GOALS OF WORK: To explore the major factors important in decision making for whole-brain radiotherapy (WBRT) for patients with brain metastases and their caregivers. PATIENTS AND METHODS: Two parallel qualitative studies, one for patients and one for caregivers of patients with newly diagnosed brain metastases, were conducted. Semistructured interviews were conducted and audiotaped with each participant. Content analysis and theme extraction of the transcripts were undertaken to identify recurring themes and relational patterns. RESULTS: Twenty patients and 19 caregivers (including eight patient and caregiver pairs) were recruited into the study. Four major factors were identified to influence decision making of whole-brain radiation: hope, knowledge, expectations of radiation therapy, and current symptoms. Analysis reveals that patients generally focus on current informational needs, while caregivers want more information about the future (e.g., life expectancy and anticipated symptoms). Caregivers expressed frustration when unable to explore future needs because patients were unprepared to discuss prognostic issues. Participants expressed substantial relief when offered WBRT after the diagnosis, but WBRT is often considered the only available plan rather than an informed choice. CONCLUSIONS: Given the importance of caregivers in the care of patients with brain metastases, fulfilling their unique informational needs appears to require more attention. The blurred boundary between hopes and expectations for WBRT creates unique challenges in joint treatment decision making for patients with brain metastases and their caregivers.