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Perspectives of Nunavut patients and families on their cancer and end of life care experiences.

ABSTRACT: The present study arose from a recognition among service providers that Nunavut patients and families could be better supported during their care journeys by improved understanding of people's experiences of the health-care system. Using a summative approach to content analysis informed by the Piliriqatigiinniq Model for Community Health Research, we conducted in-depth interviews with 10 patients and family members living in Nunavut communities who experienced cancer or end of life care. Results included the following themes: difficulties associated with extensive medical travel; preference for care within the community and for family involvement in care; challenges with communication; challenges with culturally appropriate care; and the value of service providers with strong ties to the community. These themes emphasise the importance of health service capacity building in Nunavut with emphasis on Inuit language and cultural knowledge. They also underscore efforts to improve the quality and consistency of communication among health service providers working in both community and southern referral settings and between service providers and the patients and families they serve.

SUBMITTER: Galloway T

PROVIDER: S-EPMC7448904 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature

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Perspectives of Nunavut patients and families on their cancer and end of life care experiences.

Galloway Tracey T Horlick Sidney S Cherba Maria M Cole Madeleine M Woodgate Roberta L RL Healey Akearok Gwen G

International journal of circumpolar health 20201201 1

The present study arose from a recognition among service providers that Nunavut patients and families could be better supported during their care journeys by improved understanding of people's experiences of the health-care system. Using a summative approach to content analysis informed by the <i>Piliriqatigiinniq</i> Model for Community Health Research, we conducted in-depth interviews with 10 patients and family members living in Nunavut communities who experienced cancer or end of life care. ...[more]

PMID: 32449489

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Project description:ImportancePatients with advanced-stage cancer are receiving increasingly aggressive medical care near death, despite growing concerns that this reflects poor-quality care.ObjectiveTo assess the association of aggressive end-of-life care with bereaved family members' perceptions of the quality of end-of-life care and patients' goal attainment.Design, setting, and participantsInterviews with 1146 family members of Medicare patients with advanced-stage lung or colorectal cancer in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) who died by the end of 2011 (median, 144.5 days after death; interquartile range, 85.0-551.0 days).ExposuresClaims-based quality measures of aggressive end-of-life care (ie, intensive care unit [ICU] admission or repeated hospitalizations or emergency department visits during the last month of life; chemotherapy ≤2 weeks of death; no hospice or ≤3 days of hospice services; and deaths occurring in the hospital).Main outcomes and measuresFamily member-reported quality rating of "excellent" for end-of-life care. Secondary outcomes included patients' goal attainment (ie, end-of-life care congruent with patients' wishes and location of death occurred in preferred place).ResultsOf 1146 patients with cancer (median age, 76.0 years [interquartile range, 65.0-87.0 years]; 55.8% male), bereaved family members reported excellent end-of-life care for 51.3%. Family members reported excellent end-of-life care more often for patients who received hospice care for longer than 3 days (58.8% [352/599]) than those who did not receive hospice care or received 3 or fewer days (43.1% [236/547]) (adjusted difference, 16.5 percentage points [95% CI, 10.7 to 22.4 percentage points]). In contrast, family members of patients admitted to an ICU within 30 days of death reported excellent end-of-life care less often (45.0% [68/151]) than those who were not admitted to an ICU within 30 days of death (52.3% [520/995]) (adjusted difference, -9.4 percentage points [95% CI, -18.2 to -0.6 percentage points]). Similarly, family members of patients who died in the hospital reported excellent end-of-life care less often (42.2% [194/460]) than those who did not die in the hospital (57.4% [394/686]) (adjusted difference, -17.0 percentage points [95% CI, -22.9 to -11.1 percentage points]). Family members of patients who did not receive hospice care or received 3 or fewer days were less likely to report that patients died in their preferred location (40.0% [152/380]) than those who received hospice care for longer than 3 days (72.8% [287/394]) (adjusted difference, -34.4 percentage points [95% CI, -41.7 to -27.0 percentage points]).Conclusions and relevanceAmong family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care. These findings are supportive of advance care planning consistent with the preferences of patients.

Project description:ObjectiveProtocol to explore what is known about communication between critical care providers and patients and families from culturally and linguistically diverse backgrounds (defined as people who are either from minority ethnic groups, non-English-speaking backgrounds who may have diverse cultural, linguistic, spiritual and religious affiliations and opinions) about death, dying, end-of-life care and organ donation in the intensive care unit (ICU).IntroductionPatients from culturally and linguistically diverse backgrounds experience barriers to optimised care when admitted to the ICU. These barriers appear to derive from differences in language, cultural, societal and ethical expectations between patients, their families and healthcare professionals. These barriers may significantly impact the delivery of end-of-life care to patients from culturally and linguistically diverse backgrounds. Therefore, this has the potential for inadequate management of medical, psychological and existential distress.Inclusion criteriaStudies of all designs reporting for adult (age ≥18 years) patients and family members from culturally and linguistically diverse backgrounds at end-of-life in the ICU setting will be included. Studies that report results for patients aged <18 years or that are based outside the ICU will be excluded.MethodsRelevant sources will be retrieved, and their citation details will be imported into the Joanna Briggs Institute (JBI) System for the Unified Management, Assessment and Review of Information. This scoping review was guided by the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A systematic search was conducted in EBSCOhost, Web of Science, PubMed Central and SciELO, OVID Medline, CINAHL, and Scopus, limited to English-language publications, without date limitation. Key study characteristics and findings will be extracted using a data extraction tool developed by the reviewers. Anticipating heterogeneous study designs, findings will be presented as a thematic synthesis.Ethics and disseminationThis is a protocol for a scoping review, formal ethics approval from the Human Research Ethics Committee (HREC) of the Local Health Network will be obtained for research projects that could potentially stem from this review and will then be subsequently disseminated through proper channels.

Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Project description:PurposeAttention to patients' religious and spiritual needs is included in national guidelines for quality end-of-life care, but little data exist to guide spiritual care.Patients and methodsThe Religion and Spirituality in Cancer Care Study is a multi-institution, quantitative-qualitative study of 75 patients with advanced cancer and 339 cancer physicians and nurses. Patients underwent semistructured interviews, and care providers completed a Web-based survey exploring their perspectives on the routine provision of spiritual care by physicians and nurses. Theme extraction was performed following triangulated procedures of interdisciplinary analysis. Multivariable ordinal logistic regression models assessed relationships between participants' characteristics and attitudes toward spiritual care.ResultsThe majority of patients (77.9%), physicians (71.6%), and nurses (85.1%) believed that routine spiritual care would have a positive impact on patients. Only 25% of patients had previously received spiritual care. Among patients, prior spiritual care (adjusted odds ratio [AOR], 14.65; 95% CI, 1.51 to 142.23), increasing education (AOR, 1.26; 95% CI, 1.06 to 1.49), and religious coping (AOR, 4.79; 95% CI, 1.40 to 16.42) were associated with favorable perceptions of spiritual care. Physicians held more negative perceptions of spiritual care than patients (P < .001) and nurses (P = .008). Qualitative analysis identified benefits of spiritual care, including supporting patients' emotional well-being and strengthening patient-provider relationships. Objections to spiritual care frequently related to professional role conflicts. Participants described ideal spiritual care to be individualized, voluntary, inclusive of chaplains/clergy, and based on assessing and supporting patient spirituality.ConclusionMost patients with advanced cancer, oncologists, and oncology nurses value spiritual care. Themes described provide an empirical basis for engaging spiritual issues within clinical care.

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Perspectives of Nunavut patients and families on their cancer and end of life care experiences.

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Perspectives of Nunavut patients and families on their cancer and end of life care experiences.

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