Compassionate Communication and Advance Care Planning to improve End-of-life Care in Treatment of Haematological Disease 'ACT': Study Protocol for a Cluster-randomized trial.

INTRODUCTION: To support the implementation of advance care planning and serious illness conversations in haematology, a previously developed conversation intervention titled 'Advance Consultations Concerning your Life and Treatment' (ACT) was found feasible. This study aims to investigate the effect of ACT on the quality of end-of-life care in patients with haematological malignancy and their informal caregivers. METHODS AND ANALYSIS: The study is a nationwide 2-arm cluster randomised trial randomising 40 physician-nurse clusters across seven haematological departments in Denmark to provide standard care or ACT intervention. A total of 400 patients with haematological malignancies and their informal caregivers will be included. The ACT intervention includes an ACT conversation that centres on discussing the patient's prognosis, worries, hopes and preferences for future treatment. The intervention is supported by clinician training and supervision, preparatory materials for patients and informal caregivers, and system changes including dedicated ACT-conversation timeslots and templates for documentation in medical records.This study includes two primary outcomes: (1) the proportion of patients receiving chemotherapy within the last 30 days of death and (2) patients' and informal caregivers' symptoms of anxiety (General Anxiety Disorder-7) at 3 6, 9, 12 and 18 months follow-up. Mixed effects models accounting for clusters will be used. ETHICS AND DISSEMINATION: The Declaration of Helsinki and the European GDPR regulations as practised in Denmark are followed through all aspects of the study. Findings will be made available to the participants, patient organisations, funding bodies, healthcare professionals and researchers at national and international conferences and through publication in peer-reviewed international journals. REGISTRATION DETAILS: The study is registered at ClinicalTrials.gov (NCT05444348). The Regional Ethics Committee of the Capital Region of Denmark (record no: 21067634) has decided that approval is not necessary as per Danish legislation. Study approval has been obtained from The Capital Region of Denmark Data Protection Agency (record no: P-2022-93). TRIAL REGISTRATION NUMBER: NCT05444348.

Serious illness conversations in patients with multiple myeloma and their family caregivers-A qualitative interview study.

OBJECTIVE: Patients treated for multiple myeloma often suffer from anxiety and depression related to concerns about the future. This indicates a need for improvement of communication between patients and healthcare professionals within haematology. The aim of this study was to explore how patients with multiple myeloma and their caregivers experience serious illness conversation focusing on illness understanding, concerns, values, and wishes for the future. METHODS: Phenomenological, semi-structured dyad interviews were carried out in patients with multiple myeloma (n = 12) and their caregivers (n = 11) 2-20 days after participation in one serious illness conversation. interpretive phenomenological analysis was used for analysing data. RESULTS: Three themes emerged (1) transforming patient-caregiver communication, (2) redeeming communication, and (3) equality in communication in an unequal relation. Furthermore, time allocated for the conversation and preparatory materials for the conversations highly influenced outcome. CONCLUSION: The findings suggest that serious illness conversation can help patients and family caregivers managing living life with multiple myeloma by increasing dyadic communication and strengthen their use of existential language together with healthcare professionals. This study highlights the benefits of preparing patients and caregivers prior to the conversation and cancer care systems should strive to allocate ample time for serious illness conversations.