H040 End of life with Huntington’s Disease: how can it be characterized and managed?

<h3>Background</h3> As Huntington’s disease (HD) is a progressive, and still incurable disease, it is important to improve quality of life and quality of dying. It is unclear to what extent palliative care is provided in practice and what an effective palliative intervention entails. Aim: To describe non-pharmacological interventions in the last 6 months of living with HD. <h3>Methods</h3> Charts of 82 patients who died between 2017 and 2021 in a Dutch specialized nursing home for HD were reviewed. Data about clinical manifestations and non-pharmacological treatments in the last 6 months were analyzed. The charts were reviewed by two researchers, who compared their data entry to achieve uniformity. (https://doi.org/10.17605/OSF.IO/NW42F) <h3>Results</h3> The median duration of stay in the nursing home was 4.1 years (IQR 1.7-7.2) and the mean age at death was 60.9 years (SD 11.2). We found that the last stage in HD has a broad palette of physical and psychiatric manifestations; most common are incontinence, dysphagia, fatigue, pain, chorea, agitation, resistiveness to care, anxiety, screaming and sleeping problems. All patients were treated, in different ways, by ≥1 therapist, 17% were treated by ≥6 therapists, during the last six months. In more than half of the cases, therapists remained actively involved during the last month of life. <h3>Conclusions</h3> The last stage in HD is, like other stages, characterized by a variety of symptoms. The multidisciplinary treatment changes from a more active to advising approach in the last stage, that focusses on the relieve of symptoms and the improvement of comfort.