Identifying Important Palliative Topics and Communication Preferences Among ALS Patients (QI618)

Abstract

•Recognize and discuss the different subtopics that can be important to patients with Amyotrophic Lateral Sclerosis (ALS).•Recognize when to offer palliative care and understand which provider is most appropriate to deliver this information. ALS is a rapidly progressive, lethal neurodegenerative disease. Advanced care planning, palliation, and psychosocial needs must be discussed early. Literature recommends introducing palliation at dynamic points in a disease model clinic; however, this is not consistently practiced. There are no guidelines for when, with whom, or how palliation is discussed. Our QI study surveyed patients at our ALS clinic to assess their palliative needs and preferences. To assess palliation topic preferences about advance care, psychosocial, and end-of-life planning among ALS patients attending a multidisciplinary clinic. A mixed nine-question survey was given to 30 patients with ALS attending a multidisciplinary clinic over 1 year. Descriptive statistics were performed. Thirty patients (15 males, 27 Caucasians, mean age 66, age range 51–84) enrolled. Average number of ALS clinic visits were 2 (range 1-32). Patients were “very open” to their provider discussing advanced care planning (21, 70%), planning for when more help is likely needed (20, 66.7%), likely disease complications (19, 63.3%), end-of-life discussion (20, 66.7%). Fourteen (50%) patients ranked planning for when more help is likely needed as the most important topic. Twenty (71%) patients chose “my neurologist” as their preferred healthcare provider to initiate these topics. Seventeen (61%) patients preferred their physician to present these topics rather than themselves. Sixteen (53%) patients wanted their neurologists to decide when to initiate these topics. Only five (17%) patients wanted these topics discussed at the first visit. A bivariate correlation showed a moderate association between age and openness to end-of-life discussions (r=0.439, p=0.15). Patients with ALS want to plan for their future. Advance care planning, planning for needing more help, and end-of-life discussions were ranked highest. Although our patients want initiation and discussion by their neurologist, this may be a selection bias, as other providers (social worker, psychologist, and palliative staff) are unavailable in our clinic. We hope by understanding our patients' preferences we can appropriately introduce this service.