Dataset Information

Defining priorities for improving end-of-life care in Canada.

ABSTRACT:

Background

High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families.

Methods

We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction.

Results

We approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient's condition and discussions with the doctor about final location of care and use of end-of-life technology.

Interpretation

End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making.

SUBMITTER: Heyland DK

PROVIDER: S-EPMC2972350 | biostudies-literature | 2010 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Defining priorities for improving end-of-life care in Canada.

Heyland Daren K DK Cook Deborah J DJ Rocker Graeme M GM Dodek Peter M PM Kutsogiannis Demetrios J DJ Skrobik Yoanna Y Jiang Xuran X Day Andrew G AG Cohen S Robin SR

CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20101004 16

<h4>Background</h4>High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families.<h4>Methods</h4>We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questi ...[more]

PMID: 20921249

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Project description:ImportancePeople who immigrate face unique health literacy, communication, and system navigation challenges, and they may have diverse preferences that influence end-of-life care.ObjectiveTo examine end-of-life care provided to immigrants to Canada in the last 6 months of their life.Design, setting, and participantsThis population-based cohort study (April 1, 2004, to March 31, 2015) included 967 013 decedents in Ontario, Canada, using validated linkages between health and immigration databases to identify immigrant (since 1985) and long-standing resident cohorts.ExposuresAll decedents who immigrated to Canada between 1985 and 2015 were classified as recent immigrants, with subgroup analyses assessing the association of time since immigration, and region of birth, with end-of-life care.Main outcomes and measuresLocation of death and intensity of care received in the last 6 months of life. Analysis included modified Poisson regression with generalized estimating equations, adjusting for age, sex, socioeconomic position, causes of death, urban and rural residence, and preexisting comorbidities.ResultsAmong 967 013 decedents of whom 47 514 (5%) immigrated since 1985, sex, socioeconomic status, urban (vs rural) residence, and causes of death were similar, while long-standing residents were older than immigrant decedents (median [interquartile range] age, 75 [58-84] vs 80 [68-87] years). Recent immigrant decedents were overall more likely to die in intensive care (15.6% vs 10.0%; difference, 5.6%; 95% CI, 5.2%-5.9%) after adjusting for differences in age, sex, income, geography, and cause of death (relative risk, 1.30; 95% CI, 1.27-1.32). In their last 6 months of life, recent immigrant decedents experienced more intensive care admissions (24.9% vs 19.2%; difference, 5.7%; 95% CI, 5.3%-6.1%), hospital admissions (72.1% vs 68.2%; difference, 3.9%; 95% CI, 3.5%-4.3%), mechanical ventilation (21.5% vs 13.6%; difference, 7.9%; 95% CI, 7.5%-8.3%), dialysis (5.5% vs 3.4%; difference, 2.1%; 95% CI, 1.9%-2.3%), percutaneous feeding tube placement (5.5% vs 3.0%; difference, 2.5%; 95% CI, 2.3%-2.8%), and tracheostomy (2.3% vs 1.1%; difference, 1.2%; 95% CI, 1.1%-1.4%). Relative risk of dying in intensive care for recent immigrants compared with long-standing residents varied according to recent immigrant region of birth from 0.84 (95% CI, 0.74-0.95) among those born in Northern and Western Europe to 1.96 (95% CI, 1.89-2.05) among those born in South Asia.Conclusions and relevanceAmong decedents in Ontario, Canada, recent immigrants were significantly more likely to receive aggressive care and to die in an intensive care unit compared with other residents. Further research is needed to understand the mechanisms behind this association.

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Project description:BackgroundAccess to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism to improve quality of care for the dying. The extent to which palliative care is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and end of life care in national health policies in the UK.MethodsDocumentary analysis consisting of 1) summative content analysis to describe the extent to which palliative and end of life care is referred to and/or prioritised in national health and social care policies, and 2) thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and end of life care for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were UK-wide or devolved (i.e. England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards.ResultsFifteen policy documents were included in the final analysis. Twelve referred to palliative or end of life care, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and end of life care access comprised three inter-related themes: (1) integrated care - conceptualised as reorganisation of services as a way to enable improvement; (2) personalised care - conceptualised as allowing people to shape and manage their own care; and (3) support for unpaid carers - conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs.ConclusionsAlthough information on palliative and end of life care in UK health and social care policies was sparse, improving palliative care may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of palliative care with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying.

Project description:ObjectiveTo compare recent immigrants and long-term residents in Ontario, Canada, on established health service quality indicators of end-of-life cancer care.DesignRetrospective, population-based cohort study of cancer decedents between 2004 and 2015.SettingOntario, Canada.ParticipantsWe grouped 13 085 immigrants who arrived in Ontario in 1985 or later into eight major ethnic groups based on birth country, mother tongue and surname, and compared them to 229 471 long-term residents who were ≥18 years at the time of death.Primary and secondary outcome measuresAggressive care, defined as a composite of ≥2 emergency department visits, ≥2 new hospitalisations or an intensive care unit admission within 30 days of death; and supportive care, defined as a physician house call within 2 weeks, or palliative nursing or personal support worker home visit within 6 months of death. Multivariable logistic regression was used to examine the association between immigration status and the odds of each main outcome.ResultsCompared with long-term residents, immigrants overall and by ethnic group had higher rates of aggressive care (13.7% vs 17.5%, respectively; p<0.001). Among immigrants, Southeast Asians had the highest use while White-Eastern and Western Europeans had the lowest. Supportive care use was similar between long-term residents and immigrants (50.0% vs 50.5%, respectively; p=0.36), though lower among Southeast Asians (46.6%) and higher among White-Western Europeans (55.6%). After adjusting for sociodemographic characteristics and comorbidities, immigrants remained more likely than long-term residents to receive aggressive care (OR: 1.15, 95% CI 1.09 to 1.21), yet were less likely to receive supportive care (OR: 0.95, 95% CI 0.91 to 0.98).ConclusionsAmong cancer decedents in Ontario, immigrants are more likely to use aggressive healthcare services at the end of life than long-term residents, while supportive care varies by ethnicity. Contributors to variation in end-of-life care require further study.

Dataset Information

Defining priorities for improving end-of-life care in Canada.

Background

Methods

Results

Interpretation

Publications

Defining priorities for improving end-of-life care in Canada.

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