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      Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers

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          Abstract

          Introduction

          Timely communication about life expectancy and end-of-life care is crucial for ensuring good patient quality-of-life at the end of life and a good quality of death. This article describes the protocol for a multisite randomised controlled trial of a nurse-led communication support programme to facilitate patients’ and caregivers’ efforts to communicate about these issues with their healthcare team.

          Methods and analysis

          This NHMRC-sponsored trial is being conducted at medical oncology clinics located at/affiliated with major teaching hospitals in Sydney, Australia. Patients with advanced, incurable cancer and life expectancy of less than 12 months will participate together with their primary informal caregiver where possible. Guided by the self-determination theory of health-behaviour change, the communication support programme pairs a purpose-designed Question Prompt List (QPL—an evidence-based list of questions patients/caregivers can ask clinicians) with nurse-led exploration of QPL content, communication challenges, patient values and concerns and the value of early discussion of end-of-life issues. Oncologists are also cued to endorse patient and caregiver question asking and use of the QPL. Behavioural and self-report data will be collected from patients/caregivers approximately quarterly for up to 2.5 years or until patient death, after which patient medical records will be examined. Analyses will examine the impact of the intervention on patients’ and caregivers’ participation in medical consultations, their self-efficacy in medical encounters, quality-of-life, end-of-life care receipt and quality-of-death indicators.

          Ethics and dissemination

          Approvals have been granted by the human ethics review committee of Royal Prince Alfred Hospital and governance officers at each participating site. Results will be reported in peer-reviewed publications and conference presentations.

          Trial registration number

          Australian New Zealand Clinical Trials Registry ACTRN12610000724077.

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          Most cited references32

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          Patients' expectations about effects of chemotherapy for advanced cancer.

          Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative. We studied 1193 patients participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) study (a national, prospective, observational cohort study) who were alive 4 months after diagnosis and received chemotherapy for newly diagnosed metastatic (stage IV) lung or colorectal cancer. We sought to characterize the prevalence of the expectation that chemotherapy might be curative and to identify the clinical, sociodemographic, and health-system factors associated with this expectation. Data were obtained from a patient survey by professional interviewers in addition to a comprehensive review of medical records. Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer. In multivariable logistic regression, the risk of reporting inaccurate beliefs about chemotherapy was higher among patients with colorectal cancer, as compared with those with lung cancer (odds ratio, 1.75; 95% confidence interval [CI], 1.29 to 2.37); among nonwhite and Hispanic patients, as compared with non-Hispanic white patients (odds ratio for Hispanic patients, 2.82; 95% CI, 1.51 to 5.27; odds ratio for black patients, 2.93; 95% CI, 1.80 to 4.78); and among patients who rated their communication with their physician very favorably, as compared with less favorably (odds ratio for highest third vs. lowest third, 1.90; 95% CI, 1.33 to 2.72). Educational level, functional status, and the patient's role in decision making were not associated with such inaccurate beliefs about chemotherapy. Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients' understanding, but this may come at the cost of patients' satisfaction with them. (Funded by the National Cancer Institute and others.).
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            Two decades of terror management theory: a meta-analysis of mortality salience research.

            A meta-analysis was conducted on empirical trials investigating the mortality salience (MS) hypothesis of terror management theory (TMT). TMT postulates that investment in cultural worldviews and self-esteem serves to buffer the potential for death anxiety; the MS hypothesis states that, as a consequence, accessibility of death-related thought (MS) should instigate increased worldview and self-esteem defense and striving. Overall, 164 articles with 277 experiments were included. MS yielded moderate effects (r = .35) on a range of worldview- and self-esteem-related dependent variables (DVs), with effects increased for experiments using (a) American participants, (b) college students, (c) a longer delay between MS and the DV, and (d) people-related attitudes as the DV. Gender and self-esteem may moderate MS effects differently than previously thought. Results are compared to other reviews and examined with regard to alternative explanations of TMT. Finally, suggestions for future research are offered.
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              Health care costs in the last week of life: associations with end-of-life conversations.

              Life-sustaining medical care of patients with advanced cancer at the end of life (EOL) is costly. Patient-physician discussions about EOL wishes are associated with lower rates of intensive interventions. Funded by the National Institute of Mental Health and the National Cancer Institute, Coping With Cancer is a longitudinal multi-institutional study of 627 patients with advanced cancer. Patients were interviewed at baseline and were followed up through death. Costs for intensive care unit and hospital stays, hospice care, and life-sustaining procedures (eg, mechanical ventilator use and resuscitation) received in the last week of life were aggregated. Generalized linear models were applied to test for cost differences in EOL care. Propensity score matching was used to reduce selection biases. Of 603 participants, 188 (31.2%) reported EOL discussions at baseline. After propensity score matching, the remaining 415 patients did not differ in sociodemographic characteristics, recruitment sites, illness acknowledgment, or treatment preferences. Further analyses, adjusted by quintiles of propensity scores and significant confounders, revealed that the mean (SE) aggregate costs of care (in 2008 US dollars) were $1876 ($177) for patients who reported EOL discussions compared with $2917 ($285) for patients who did not, a cost difference of $1041 (35.7% lower among patients who reported EOL discussions) (P =.002). Patients with higher costs had worse quality of death in their final week (Pearson production moment correlation partial r = -0.17, P =.006). Patients with advanced cancer who reported having EOL conversations with physicians had significantly lower health care costs in their final week of life. Higher costs were associated with worse quality of death.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2014
                26 June 2014
                : 4
                : 6
                : e005745
                Affiliations
                [1 ]Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney , Sydney, New South Wales, Australia
                [2 ]HammondCare Palliative and Supportive Care Service, Greenwich Hospital , Greenwich, New South Wales, Australia
                [3 ]Cardiovascular and Chronic Care Centre, Curtin University of Technology , Sydney, New South Wales, Australia
                [4 ]School of Public Health, University of Sydney , Sydney, New South Wales, Australia
                [5 ]Department of Family Medicine, University of Rochester Medical Centre , Rochester, New York, USA
                Author notes
                [Correspondence to ] Adam Walczak; adam.walczak@ 123456sydney.edu.au
                Article
                bmjopen-2014-005745
                10.1136/bmjopen-2014-005745
                4078787
                24969786
                45edfd7c-1cac-4c6e-9b04-41cf909a11b4
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions

                This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

                History
                : 21 May 2014
                : 6 June 2014
                Categories
                Communication
                Protocol
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                Medicine
                communication,cancer,end-of-life care,advance care planning,question prompt list,caregivers
                Medicine
                communication, cancer, end-of-life care, advance care planning, question prompt list, caregivers

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