This study will demonstrate whether an end-of-life preparation and completion intervention improves reduces caregiver anxiety, depression, anticipatory grief, burden and completion and improves patient quality of life and health care utilization. If effective, the intervention (Caregver Outlook) offers a brief, inexpensive, and transportable non-physician treatment method for improving the experience of veterans and their caregivers at end-of-life. Informal caregivers provide a majority of care for patients at the end of life. Efforts to improve caregiver and thus patient experience often focus on pain and symptom management and coping skills. However, less is known about effective ways to address other elements of caregivers' role that may increase capacity to care, namely their relationship to the patient. Two important elements of this relationship experience are end-of-life preparation and completion. Left unattended, caregivers may find themselves less capable of caring for a loved one and unable to make crucial decisions influencing care. We designed the Caregiver Outlook intervention, based on the human development literature and robust evidence in health communication and clinical psychology that addresses the value of expressing emotions and stress on health outcomes.
Our specific aims are to: 1) Evaluate the impact of the Caregiver Outlook intervention on caregiver anxiety, depression, anticipatory grief, completion, and burden; 2) Evaluate the impact of the Caregiver Outlook intervention on patient health service utilization, as measured by number of days at home versus in hospital, emergency department, or nursing facility; 3) Evaluate the impact of the Caregiver Outlook intervention on quality of life in patients with advanced disease; 4) Analyze the intervention session's qualitative content, examining variation associated with gender, ethnicity, social economic status, quality of family communication, and stage of illness to improve understanding of the intervention mechanisms of change. We propose a randomized control trial to evaluate the intervention. Dyads of 214 caregivers and veterans with advanced cancer, CHF, or COPD will be randomly assigned into one of two intervention groups and complete a brief battery of pre-test measures. Caregivers in the first group (treatment) will meet with a facilitator three times for a period of forty-five minutes eac. In the first session, subjects will be asked to discuss issues related to relationship life review.In session two, participants will be asked to speak in more depth about issues such as regret and forgiveness. In the final session, subjects will focus on legacy and celebration. Caregivers in the second group (attention control) will meet with a facilitator three times for a period of forty-fve minutes each and be asked to listen to a non-guided relaxation CD. Participants in both groups will receive pre and post-test measures administered by a blinded interviewer. Outcomes will be measured using the FACT-G and quality of life scale, the FACIT-sp sub-scale, the Centers for Epidemiologic Study of Depression short form, the Profile of Moods anxiety sub-scale, the Anticipatory Grief Scale, Caregiver Reaction Assessment, the QUAL-E completion and preparation sub-scales, and patient days at home.
At end of life, veterans face physical, emotional and spiritual challenges. During this crucial time, the majority of end-of-life care is provided by patients' friends and family. Their capacity to offer care often determines whether the veteran stays at home or enters an institution. Current caregiver training focuses on pain and symptom management and coping with the increased burdens. However, less is known about effective ways to address other elements of experience that may increase capacity to care and thus improve patient quality of life. Two important elements of this experience are end-of-life preparation and relationship completion. This study will demonstrate whether an end-of-life preparation and completion intervention improves patient quality of life and health care utilization, and reduces caregiver anxiety, depression, anticipatory grief, and burden.
