Discussing prognosis and end-of-life care in the final year of life: A randomized controlled trial of a nurse-led ommunication support programme for patients and caregivers
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Introduction: Timely communication about lifeexpectancy and end-of-life care is crucial forensuring good patient quality-of-life at the end of lifeand a good quality of death. This article describes theprotocol for a multisite randomised controlled trial of anurse-led communication support programme tofacilitate patients' and caregivers' efforts tocommunicate about these issues with theirhealthcare team.Methods and analysis: This NHMRC-sponsored trialis being conducted at medical oncology clinics locatedat/affiliated with major teaching hospitals in Sydney,Australia. Patients with advanced, incurable cancer andlife expectancy of less than 12 months will participatetogether with their primary informal caregiver wherepossible. Guided by the self-determination theory ofhealth-behaviour change, the communication supportprogramme pairs a purpose-designed Question PromptList (QPL-an evidence-based list of questionspatients/caregivers can ask clinicians) with nurse-ledexploration of QPL content, communication challenges,patient values and concerns and the value of earlydiscussion of end-of-life issues. Oncologists are alsocued to endorse patient and caregiver question askingand use of the QPL. Behavioural and self-report datawill be collected from patients/caregivers approximatelyquarterly for up to 2.5 years or until patient death, afterwhich patient medical records will be examined.Analyses will examine the impact of the intervention onpatients' and caregivers' participation in medicalconsultations, their self-efficacy in medical encounters,quality-of-life, end-of-life care receipt and quality-ofdeathindicators.Ethics and dissemination: Approvals have beengranted by the human ethics review committee ofRoyal Prince Alfred Hospital and governance officersat each participating site. Results will be reported inpeer-reviewed publications and conferencepresentations.Trial registration number: Australian New ZealandClinical Trials Registry ACTRN12610000724077.
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