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 referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
Background: Many people with terminal illness prefer to die in home-like settings—including care homes, hospices, or palliative care units—rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care.
Objective: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015.
Methods: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score–matched individuals under usual care (ie, did not receive home care services in the last 90 days of life).
Results: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392).
Conclusion: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.
Background: Research shows that access to palliative care can help patients avoid dying in hospital. However, access to palliative care services during the terminal hospitalization, specifically, has not been well studied.
Objective: To determine whether access to palliative care varied by disease trajectory among terminal hospitalizations.
Design, Setting, Subjects: We conducted a population-based retrospective cohort study of decedents who died in hospital in Ontario, Canada between 2012 and 2015 by using linked administrative databases.
Measurements: Using hospital and physician billing codes, we classified access to palliative care in three mutually exclusive groups of patients with terminal hospitalization: (1) main diagnosis for admission was palliative care; (2) main diagnosis was not palliative care, but the patient received palliative care specialist consultation; and (3) the patient did not receive any specialist palliative care. We conducted a logistic regression on odds of never receiving palliative care.
Results: We identified 140,475 decedents who died in an inpatient hospital unit, which represents 42% of deaths. Among inpatient hospital deaths, 23% (n = 32,168) had palliative care listed as the main diagnosis for admission, 41% (n = 58,210) received specialist palliative care consultation, and 36% (n = 50,097) never had access to specialist palliative care. In our regression, dying of organ failure or frailty compared with cancer increased the odds of never receiving palliative care by 4.07 (95% confidence interval [CI]: 3.95–4.20) and 4.51 (95% CI: 4.35–4.68) times, respectively.
onclusions: A third of hospital deaths had no palliative care involvement. Access to specialist palliative care is particularly lower for noncancer decedents. Inpatient units play an important role in providing end-of-life care.
OBJECTIVE: This study captured the end-of-life care experiences across various settings from bereaved caregivers of individuals who died in residential hospice.
METHODS: A retrospective, observational design using the CaregiverVoice survey with bereaved caregivers of patients in 22 hospices in Ontario, Canada. The survey assessed various dimensions of the patient's care experiences across multiple care settings in the last 3 months of life.
RESULTS: A total of 1153 caregivers responded to the survey (44% response rate). In addition to hospice care, caregivers reported that 74% of patients received home care, 61% had a hospitalization, 42% received care at a cancer center, and 10% lived in a nursing home. Most caregivers (84%-89%) rated the addressing of each support domain (relief of physical pain, relief of other symptoms, spiritual support, and emotional support) by hospice as either "excellent" or "very good." These proportions were less favorable for home care (40%-47%), cancer center (46%-54%), and hospital (37%-48%). Significantly, better experiences were reported for the last week of life where hospice was considered the main setting of care, opposed to other settings ( P < .0001 across domains). Overall, across settings pain management tended to be the highest-rated domain and spiritual support the lowest.
CONCLUSION: This is one of few quantitative examinations of the care experience of patients who accessed multiple care settings in the last months of life and died in a specialized setting such as residential hospice. These findings emphasize the importance of replicating the hospice approach in institutional and home settings, including greater attention to emotional and spiritual dimensions of care.
Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life.
Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients.
Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC).
Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care.
Measurements: We compared individuals with cancer (n = 21,119) with those without cancer (n = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs.
Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23).
Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.
BACKGROUND: Access to community-based specialist palliative care teams has been shown to improve patients' quality of life; however, the impact on health system expenditures is unclear. This study aimed to determine whether exposure to these teams reduces health system costs compared with usual care.
METHODS: We conducted a retrospective matched cohort study in Ontario, Canada, using linked administrative data. Decedents treated by 1 of 11 community-based specialist palliative care teams in 2009/10 and 2010/11 (the exposed group) were propensity score matched (comorbidity, extent of home care, etc.) 1 to 1 to similar decedents in usual care (the unexposed group). The teams are comprised of a core group of specialized physicians, nurses and other providers; their role is to manage symptoms around the clock, provide education and coordinate care. Our primary outcome was the overall difference in health system costs (among 5 health care sectors) between all matched pairs of exposed versus unexposed patients in the last 30 days of life.
RESULTS: The total cohort of decedents included 3109 matched pairs. Among matched pairs, the mean health system cost difference was $512 (95% confidence interval [CI] -$641 to -$383) lower in the last 30 days among exposed than among unexposed patients. In the last 30 days, the mean home care costs of the exposed group were $189 higher (95% CI -$151 to $227) than those of the unexposed group, but their mean hospital costs were $733 lower (95% CI -$950 to -$516).
INTERPRETATION: Our study suggests that health system costs are lower for patients who have access to community-based specialist teams than for those who receive usual care alone, largely because of decreased hospital costs. Ensuring access to in-home palliative care support, as provided by these teams, is an efficacious strategy for reducing health care expenditures at the end of life.
BACKGROUND: Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment.
METHODS: Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario's geographic regions, and across four common life-limiting illnesses to observe variation.
RESULTS: Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66–2.89) and pain (OR = 1.59; 95% CI: 1.53–1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%).
CONCLUSION: Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice.
BACKGROUND/OBJECTIVES: Place of death is a commonly reported indicator of palliative care quality, but does not provide details of service utilization near end of life. This study aims to explore place of care trajectories in the last two weeks of life in a general population and by disease cohorts.
DESIGN/SETTING: A retrospective population-based cohort study using linked administrative-health data to examine Ontario decedents between April 1, 2010 and December 31, 2012.
MEASUREMENTS: Place of care trajectories in the last two weeks of life.
RESULTS: We identified 235,159 decedents. Of which, 215,533 represented the major cohorts of our analysis-cancer (32%), frailty (29%), and organ failure (31%). Sixty-one percent of all decedents died in hospital-based settings. Place of care utilization trends show us a marked increase in use of palliative-acute hospital care (13%-26%) and acute hospital care (12%-25%) and a small decrease in community care use (15%-12%) in the last two weeks of life. Those with cancer were the largest users of palliative-acute hospital care, while those with organ failure were the largest users of acute-hospital care.
CONCLUSIONS: Place of care trajectories show a marked rise in care in hospital-based settings from 29% to 61% in the last two weeks of life. Nearly half of all hospital deaths had palliative care as the main service provided. Place of care trajectories differ greatly by disease cohort. Exploring place of care trajectories in the last two weeks of life can illuminate end-of-life utilization patterns not evident when reporting solely place of death.
BACKGROUND: Interprofessional specialized palliative care teams at home improve patient outcomes, reduce healthcare costs, and support many patients to die at home. However, practical details about how to develop home-based teams in different regions and health systems are scarce.
AIM: To examine how a variety of home-based specialized palliative care teams created and grew their team over time and to identify critical steps in their evolution.
DESIGN: A qualitative study was designed based on a grounded theory approach, using semi-structured interviews and other documentation.
SETTING/PARTICIPANTS: In all, 15 specialized palliative care teams from Ontario, Canada, representing rural and urban areas. Data were collected from core members of the teams, including nurses, physicians, personal support workers, spiritual counselors, and administrators.
RESULTS: In all, 122 individuals where interviewed, ranging from 4 to 10 per team. The analysis revealed four stages in team evolution: Inception, Start-up (n = 4 teams), Growth (n = 5), and Mature (n = 6). In the Inception stage, a champion provider was required to leverage existing resources to form the team. Start-up teams were testing and adjusting care processes to solidify their presence in the community. Growth teams had core expertise, relationships with fellow providers, and 24/7 support. Mature teams were fully integrated in the community, but still engaged in continuous quality improvement.
CONCLUSION: Understanding the developmental stages of teams can help to inform the progress of other community-based teams. Appropriate outcome measures at each stage are also critical for team motivation and steady progress.
BACKGROUND: Several studies have demonstrated the benefits of early initiation of end-of-life care, particularly homecare nursing services. However, there is little research on variations in the timing of when end-of-life homecare nursing is initiated and no established benchmarks.
METHODS: This is a retrospective cohort study of patients with a cancer-confirmed cause of death between 2004 and 2009, from three Canadian provinces (British Columbia, Nova Scotia, and Ontario). We linked multiple administrative health databases within each province to examine homecare use in the last 6 months of life. Our primary outcome was mean time (in days) to first end-of-life homecare nursing visit, starting from 6 months before death, by region. We developed an empiric benchmark for this outcome using a funnel plot, controlling for region size.
RESULTS: Of the 28 regions, large variations in the outcome were observed, with the longest mean time (97 days) being two-fold longer than the shortest (55 days). On average, British Columbia and Nova Scotia had the first and second shortest mean times, respectively. The province of Ontario consistently had longer mean times. The empiric benchmark mean based on best-performing regions was 57 mean days.
CONCLUSIONS: Significant variation exists for the time to initiation of end-of-life homecare nursing across regions. Understanding regional variation and developing an empiric benchmark for homecare nursing can support health system planners to set achievable targets for earlier initiation of end-of-life care.
OBJECTIVES: To examine access to palliative care between different disease trajectories and compare to other geographic areas.
DESIGN: A retrospective population-based decedent cohort study using linked administrative data.
SETTING: Ontario, Canada.
PARTICIPANTS: Ontario decedents between 1 April 2010 and 31 December 2012. Patients were categorised into disease trajectories: terminal illness (eg, cancer), organ failure (eg, chronic heart failure), frailty (eg, dementia), sudden death or other.
INTERVENTIONS: Receipt of palliative care services from institutional and community settings, derived from a validated list of palliative care codes from multiple administrate databases.
OUTCOME MEASURES: Receiving any palliative care services in the last year of life (yes/no), intensity (total days) and time of initiation of palliative care, in hospital and community sectors. Multivariable analysis examined the association between disease trajectory and the receipt of palliative care in the last year of life.
RESULTS: We identified 235 159 decedents in Ontario. In the last year of life, 88% of terminal illness, 44% of organ failure and 32% of frailty decedents accessed at least one palliative care service. Most care was provided during an inpatient hospitalisation. Terminal illness decedents received twice as many palliative care days (mean of 49 days) compared with organ failure and frailty decedents. Patients with terminal illness initiated palliative care median of 107 days before death compared with median of 19 days among those using the US Medicare hospice benefit.
CONCLUSIONS: Terminal illness decedents are more likely to receive any palliative care, with increased intensity and earlier before death than organ failure or frailty decedents. These data serve as a useful comparison for other countries with similar and different healthcare systems and eligibility criteria.
BACKGROUND: While most individuals wish to die at home, the reality is that most will die in hospital.
AIM: To determine whether receiving a physician home visit near the end-of-life is associated with lower odds of death in a hospital.
DESIGN: Observational retrospective cohort study, examining location of death and health care in the last year of life.
SETTING/PARTICIPANTS: Population-level study of Ontarians, a Canadian province with over 13 million residents. All decedents from April 1, 2010 to March 31, 2013 (n = 264,754).
RESULTS: More than half of 264,754 decedents died in hospital: 45.7% died in an acute care hospital and 7.7% in complex continuing care. After adjustment for multiple factors-including patient illness, home care services, and days of being at home-receiving at least one physician home visit from a non-palliative care physician was associated with a 47% decreased odds (odds-ratio, 0.53; 95%CI: 0.51-0.55) of dying in a hospital. When a palliative care physician specialist was involved, the overall odds declined by 59% (odds ratio, 0.41; 95%CI: 0.39-0.43). The same model, adjusting for physician home visits, showed that receiving palliative home care was associated with a similar reduction (odds ratio, 0.49; 95%CI: 0.47-0.51).
CONCLUSION: Location of death is strongly associated with end-of-life health care in the home. Less than one-third of the population, however, received end-of-life home care or a physician visit in their last year of life, revealing large room for improvement.
OBJECTIVE: The home is an important and often preferable setting of palliative care. While much research has demonstrated the benefits of specialized palliative homecare on patient and system outcomes, there has been little delineation of the underlying components of these efficacious programs. We synthesized the essential elements of palliative homecare from a combined review of successful programs, perspectives of patients and caregivers, and views of healthcare providers in palliative care.
METHODS: Five unique palliative homecare studies were included in the rapid review and synthesis-(1) systematic review of the components of efficacious programs; (2) in-depth analysis of 11 effective community-based teams; (3) survey of bereaved caregivers; (4) survey of the general public; and (5) interviews of providers and administrators. A qualitative approach was used to identify transcending themes across the studies.
RESULTS: Six essential elements of quality palliative homecare were common across the studies: (1) Integrated teamwork; (2) Management of pain and physical symptoms; (3) Holistic care; (4) Caring, compassionate, and skilled providers; (5) Timely and responsive care; and (6) Patient and family preparedness.
CONCLUSIONS: Our metasynthesis of effective palliative homecare models, as well as, the values of those who use and provide these services, illuminates the underpinning elements of quality home-based care for patients with a life-limiting illness. However, the application of these elements must be relevant to the local community context. To create impactful, sustainable homecare programs, it is critical to capitalize on existing processes, partnerships, and assets.
BACKGROUND: Studies have demonstrated the strong association between increased end-of-life homecare nursing use and reduced acute care utilization. However, little research has described the utilization patterns of end-of-life homecare nursing and how this differs by region and community size.
METHODS: A retrospective population-based cohort study of cancer decedents from Ontario, British Columbia, and Nova Scotia was conducted between 2004 and 2009. Provinces linked administrative databases which provide data about homecare nursing use for the last 6 months of life for each cancer decedent. Among weekly users of homecare nursing in their last six months of life, we describe the proportion of patients receiving end-of-life homecare nursing by province and community size.
RESULTS: Our cohort included 83,746 cancer decedents across 3 provinces. Patients receiving end-of-life nursing among homecare nursing users increased from weeks -26 to -1 before death by: 78% to 93% in British Columbia, 40% to 81% in Ontario, and 52% to 91% in Nova Scotia. In all 3 provinces, the smallest community size had the lowest proportion of patients using end-of-life nursing compared to the second largest community size, which had the highest proportion.
CONCLUSIONS: Differences in end-of-life homecare nursing use are much larger between provinces than between community sizes.
BACKGROUND: Measuring the care experience at end-of-life (EOL) to inform quality improvement is a priority in many countries. We validated the CaregiverVoice survey, a modified version of the VOICES questionnaire, completed by bereaved caregivers to capture perceptions of care received in the last three months of a patient's life.
METHODS: We conducted a retrospective survey of bereaved caregivers representing palliative care patients who died in a residential hospice and/or received palliative homecare in Ontario, Canada. Statistical analyses were completed to establish construct and concurrent validity, as well as reliability of the survey.
RESULTS: Responses were obtained from 906 caregivers: 330 surveyed from homecare agencies and 576 from hospices. The CaregiverVoice survey demonstrated concurrent validity in scores correlating to FAMCARE2 items, and construct validity in performing according to expected patterns, e.g., correlation of scores to qualitative perceptions and significant variability based on care contexts such as place of death and setting of care (p < 0.01). Reliability was exhibited in good inter-item correlation of ratings for specific care settings and no significant differences in ratings regardless of whether up to a year had passed since death of patient.
CONCLUSIONS: The CaregiverVoice survey demonstrated validity and reliability in the populations assessed. This survey represents one common measure that can be standardized across multiple care settings and is useful for assessing the care experience that can help inform local and national quality improvement activities.
OBJECTIVE: Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, the authors examined the positive and negative perceptions of care in hospices and in other prior settings. METHOD: Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses. RESULTS: A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.
SIGNIFICANCE OF RESULTS: Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.
Cette comparaison révèle des tendances vers une plus grande collaboration interprofessionnelle dans l'équipe de spécialistes que dans l'équipe témoin, mais seulement quelques sous-échelles étaient statistiquement significatives. D'autres recherches sont requises pour corroborer les résultats.