RESUMO
Management of severe (drug-resistant) epilepsy and epilepsy in other serious illnesses is multidimensional and requires consideration of both physical symptoms and psychosocial distress that require individualized treatment. Palliative care offers a holistic approach to disease that focuses on all dimensions of suffering to maintain quality of life. Integration of a palliative care mind- and skillset in the management of severe epilepsy and epilepsy in other serious illnesses can provide person-centered care and support for families and caregivers.
RESUMO
Palliative care adds significant burdens to healthcare workers. In neuropalliative care (NPC), additional challenges include patient symptom burdens, such as impairments in mobility, cognition, and communication. After one year of operating the first NPC ward in Germany, we assessed burdens, resources, and the number of deaths perceived as stressful. NPC physicians and nursing staff were compared with the team of other neurological wards, including a stroke unit. The assessment took place between March 2022 and May 2022. All 64 team members were contacted; the responder rate was 81%. The perceived burden was high but did not differ between groups. There were no differences between the NPC- and the neurological wards in the number of deaths perceived as stressful. However, rather than the number of deaths, the circumstances of dying influence the perceived distress. The resources mentioned were similar between groups, with the team and private life being most important. Communication difficulties were frequently cited as stressful, whereas successful communication was identified as a resource.
