Monitoring health service use at the end of life in the Calgary Zone of Alberta: a Population-level analysis linking multiple administrative datasets

Introduction As part of the Alberta Health Services (AHS) Calgary Zone Healthcare planning, a Palliative and End of Life Care Program (PEOLC) dashboard was developed and face validity of the indicators was examined by key stakeholders such as clinicians and decision makers. Objectives and Approach An internal dashboard was developed to explore End of Life (EOL) indicators that could provide evidence to support local PEOLC planning. Multiple administrative datasets available to AHS were used to estimate population needs of palliative care, current state of resource use, and EOL quality indicators. Underlying cause of death in Vital Statistics data was used to calculate minimal and maximal population estimates of palliative care needs between 2000 and 2014. Trends in acute care use during the last year of life were analyzed. Overall rates and geographic variations of selected indicators in Calgary Zone were reported. Results Over the period 2000 to 2014, number of adult deaths increased in Calgary Zone, from 5,094 in 2000 to 6,823 in 2014. In 2015/16, about half of all 10,848 hospital discharges in the last year of life were incurred in the last 60 days of life, and about 40 percent were incurred in the last 30 days. Overall, 11% of decedents visited ED more than once, 7% were discharged from hospital more than once, 19% spent more than 14 days in hospital. According to the ED and inpatient data, 40.7% of decedents, roughly 3,000 people, died in hospital. We observed an urban rural continuum gradient in most of these indicators, with rates varying more than two-fold for ED and hospital discharge related indicators. Conclusion/Implications The project demonstrates the feasibility of using existing data to generate information to support the PEOLC program planning in Calgary Zone. With early stakeholder engagement in dashboard design, analysis, interpretation, and dissemination, the dashboard was well received and will be updated as more recent data becomes available

Validating the accuracy of place of death in Vital Statistics of Calgary Zone residents in 2015

Introduction Administrators and researchers of community and hospital based palliative care services have relied on Vital Statistics for place of death information without knowing the full extent of its accuracy. We sought to understand and document whether Vital Statistics’ place of death is confirmed by other data sources. Objectives and Approach Understand the degree of confirmation of Vital Statistics' place of death with multiple data sources using a first found cascading method. The following order of cascading data sources were used: Discharge Abstract Data (DAD), National Ambulatory Care Reporting System (NACRS), Strata Health Pathways (hospice), ACCIS (LTC), and PARIS (supportive living). Hospital deaths were first confirmed using DAD. If not found, we searched the next data source NACRS (Emergency Department) followed by hospice, long term care, and supportive living. If the death was not found in these five sources, death was classified as 'Other" and the residency of home was inferred. Results Of 7,176 deaths recorded in Vital Statistics (VS), 4,749 were confirmed of which 78% (N=2580) of VS hospital deaths, 96.2 (N=1179) of VS home deaths, and 60.3% (N=990) of VS Nursing Home deaths were confirmed. Inferred nursing home death were recorded as Hospital (N=147), Auxiliary Hospitals (N=61), and Other (N=41). Inferred home deaths were classified as Other (256), Hospital (84), Nursing Home (33), Unknown (7), and En Route (7). Inferred en route or emergency department death were classified as hospital (360). Supportive living deaths, not a category in Vital Statistics, were classified as Other (N=81), Nursing Home (N=51), At Home (N=33). Hospice death, no longer a category in Vital Statistics since 2012, were classified as Nursing Home (N=563), Hospital (N=152), Auxiliary Hospital (N=168), Other (N=334). Conclusion/Implications 66% of 7,176 Deaths in Vital Statistics were confirmed by other data sources. Using multiple data sources, hospital deaths would decrease by 22%, confirmed nursing home death would increase by 25%, and hospice deaths would no longer be misclassified into hospital (N=152), Aux. Hospital (N=168), and Other (N=334)

Breathlessness in the elderly during the last year of life sufficient to restrict activity

OBJECTIVES: Breathlessness is prevalent in older people. Symptom control at the end of life is important. This study investigated relationships between age, clinical characteristics and breathlessness sufficient to have people spend at least one half a day in that month in bed or cut down on their usual activities (restricting breathlessness) during the last year of life. DESIGN: Secondary data-analysis SETTING: General community PARTICIPANTS: 754 non-disabled persons, aged 70 and older. Monthly telephone interviews were conducted to determine the occurrence of restricting breathlessness. The primary outcome was the percentage of months with restricting breathlessness reported during the last year of life. RESULTS: Data regarding breathlessness were available for 548/589 (93.0%) decedents (mean age 86.7 years (range 71 to 106; males 38.8%). 311/548 (56.8%) reported restricting breathlessness at some time-point during the last year of life but no-one reported this every month. Frequency increased in the months closer to death irrespective of cause. Restricting breathlessness was associated with anxiety, (0.25 percentage point increase in months breathlessness per percentage point months reported anxiety, 95% CI 0.16 to 0.34, P<0.001), depression (0.14, 0.05 to 0.24, P=0.002) and mobility problems (0.07, 0.03 to 0.1, P=0.001). Percentage months of restricting breathlessness increased if chronic lung disease was noted at the most recent comprehensive assessment (6.62 percentage points, 95% CI 4.31 to 8.94, P<0.001), heart failure (3.34, 0.71 to 5.97, P<0.01), and ex-smoker status (3.01, 0.94 to 5.07, P=0.002), but decreased with older age (─0.19, ─0.37 to ─0.02, P=0.03). CONCLUSION: Restricting breathlessness increased in this elderly population in the months preceding death from any cause. Breathlessness should be assessed and managed in the context of poor prognosis

Pharmacovigilance in hospice/palliative care: net effect of haloperidol for nausea or vomiting

Background: Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use. Objective: To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients. Design: A prospective, multicenter, consecutive case series. Setting/Subjects: Twenty-two sites, five countries: consultative, ambulatory, and inpatient services. Measurements: When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline; 48 hours (benefits); day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE). Results: Data were collected (May 2014–March 2016) from 150 patients: 61% male; 86% with cancer; mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10–90). At baseline, nausea was moderate (88; 62%) or severe (11; 8%); 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5 mg/24 hours (0.5–5 mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%); dry mouth 13 (21%); and somnolence 12 (19%). Conclusions: Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms

A Multi-Stage Process to Develop Quality Indicators for Community-Based Palliative Care Using interRAI Data

Background: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments-an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families. Methods: The development efforts took part in multiple stages, between 2017-2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method. Results: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs. Conclusions: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families

Comparing the physical, psychological, social, and spiritual needs of patients with non-cancer and cancer diagnoses in a tertiary palliative care setting

OBJECTIVE: The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer. METHOD: We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: •Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium•Psychological: depression, anxiety, prognosis, and dignity•Social: caregiver burden, isolation, and financial•Spiritual: spiritual distress. RESULTS: The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer. SIGNIFICANCE OF RESULTS: The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses

Description of Continuous Palliative Sedation Practices in a Large Health Region and Comparison with Clinical Practice Guidelines

Background: Published reports of continuous palliative sedation therapy (CPST) suggest heterogeneity in practice. There is a paucity of reports that compare practice with clinical guidelines. Objectives: To assess adherence of continuous palliative sedation practices with criteria set forth in local clinical guidelines, and to describe other features including prevalence, medication dosing, duration, multidisciplinary team involvement, and concurrent therapies. Design: Retrospective chart review. Settings/Subjects: We included cases in which a midazolam infusion was ordered at the end of life. Study sites included four adult hospitals in the Calgary health region, two hospices, and a tertiary palliative care unit. Measurements: Descriptive data, including proportion of deaths involving palliative sedation therapy, number of criteria documented, midazolam dose/duration, concurrent symptom management therapies, and referrals to spiritual care, psychology, or social work. Results: CPST occurred in 602 out of 14,360 deaths (4.2%). Full adherence to criteria occurred in 7% of cases. The most commonly missed criteria were: a "C2" goals-of-care designation order (comfort care focus in the imminently dying) (84%) and documentation of imminent death in the chart (55%). Concurrent medical therapies included opioids in 98% of cases and intravenous hydration in 85% of cases. Few referrals were made to multidisciplinary care teams. Conclusions: We found low adherence to palliative sedation guidelines. This may reflect the perception that some criteria are redundant or clinically unimportant. Future work could include a study of barriers to guideline uptake, and guideline modification to provide direction on concurrent therapies and multidisciplinary team involvement

Quality of End-of-Life Care in Gastrointestinal Cancers: A 13-Year Population-Based Retrospective Analysis in Ontario, Canada

Population-based quality indicators of either aggressive or supportive care at end of life (EOL), especially when specific to a cancer type, help to inform quality improvement efforts. This is a population-based, retrospective cohort study of gastrointestinal (GI) cancer decedents in Ontario from 1 January 2006–31 December 2018, using administrative data. Quality indices included hospitalizations, emergency department (ED) use, intensive care unit admissions, receipt of chemotherapy, physician house call, and palliative home care in the last 14–30 days of life. Previously defined aggregate measures of both aggressive and supportive care at end of life were also used. In our population of 69,983 patients who died of a GI malignancy during the study period, the odds of experiencing aggressive care at EOL remained stable, while the odds of experiencing supportive care at EOL increased. Most of our population received palliative care in the last year of life (n = 65,076, 93.0%) and a palliative care home care service in the last 30 days of life (n = 45,327, 70.0%). A significant number of patients also experienced death in an acute care hospital bed (n = 28,721, 41.0%) or had a new hospitalisation in the last 30 days of life (n = 33,283, 51.4%). The majority of patients received palliative care in the last year of life, and a majority received a palliative care home service within the last 30 days of life. The odds of receiving supportive care at EOL have increased over time. Differences in care exist according to income, age, and rurality

Non-steroidal anti-inflammatory drugs for pain in hospice/palliative care: an international pharmacovigilance study

Objectives: To describe the current, real-world use of non-steroidal anti-inflammatory drugs for pain and the associated benefits and harms. Methods: A prospective, multicentre, consecutive cohort pharmacovigilance study conducted at 14 sites across Australia, Aotearoa/New Zealand and the UK including hospital, hospice inpatient and outpatient services. Pain scores and harms were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events at baseline, 2 days and 14 days. Ad-hoc safety reporting continued until day 28. Results: Data were collected from 92 patients between March 2018 and October 2021. Most patients had cancer (91%) and were coprescribed opioids (90%). At 14 days, 88% of patients had benefit from non-steroidal anti-inflammatory drugs and 22% had harm. The most common harms were nausea (8%), vomiting (3%), acute kidney injury (3%) and non-gastrointestinal bleeding (3%); only 2% were severe and no patients ceased their non-steroidal anti-inflammatory drugs due to toxicity. Overall, 65% had benefit without harm and 3% had harm without benefit. Conclusions: Most patients benefited from non-steroidal anti-inflammatory drugs with only one in five patients experiencing tolerable harm. This suggests that short-term use of non-steroidal anti-inflammatory drugs in patients receiving palliative care is safer than previously thought and may be underused

Tertiary Inpatient Palliative Care within Region-Wide Services: A Retrospective Examination of Psychosocial and Medical Demographics at Admissions

Palliative care offers symptom relief and improved quality of life. Tertiary palliative care units (TPCUs) focus on complex suffering under the care of specialist palliative physicians and interdisciplinary teams. The Intensive Palliative Care Unit (IPCU) is a TPCU integrated in well-developed region-wide palliative services in Calgary, Canada. We compared the population accessing the IPCU to published data from other Canadian sites. Methods: A retrospective chart review was conducted using 8 sample months over a 2-year period. We gleaned psychosocial and medical demographics alongside the self-reported symptom burden on the Edmonton Symptom Assessment System. Descriptive statistics were calculated. Results: Adults (n = 117) with cancer admitted to the IPCU were 5–10 years younger, had later-stage cancer, and had higher discharges to preferred locations than other published Canadian TPCUs. Up to two months before admission, most commonly reported symptoms were consistent with the outpatient literature although with higher reported intensity. Discussion: With more advanced disease, younger age, and elevated symptom burden before admission, the IPCU still discharged patients to preferred locations at higher rates than other sites. This may be due to integration in the region’s organized palliative care services. Conclusion: With proper integration, a TPCU may be able to improve quality of life and reduce deaths in hospitals