Palliative care for people with long term neurological conditions: practices and reflections based on comprehensive care

Abstract

The care for people with Long Term Neurological Conditions (LTNC) isn´t recognized as a major practice in Palliative Care (PC) scientific production; in daily basis, the assistance is focused on hygiene´s care and clinical observation. However, from the perspective of PC, the health professionals´ role is to promote the dignity of the human person. The concept of LTNC covers neurological diseases with a prognosis of long-time life with significant disabilities, end-of-life stage that is difficult to identify, with many symptoms and physical and cognitive impairments. In this paper, we considered the following situations: persistent vegetative state, minimal consciousness state and locked-in syndrome. This is a theoretical study of a qualitative nature, which aims to describe a new kind of PC practice with this population, based on first author PHD study. The concept of Comprehensive Care is the main theoretical framework for the paper. It is proposed a practice reconstruction based on the person´s biography occurs by several perspectives, especially through sensory stimuli related to prior patient´s occupational repertoire. Along with the detailed evaluation, the therapist does a careful and continuous monitoring, proposing activities, giving special attention to their reactions, being able to discriminate what pleases or not, and expanding the possibilities of encounter of people with LTNC and the environment which surround them. Therapist should also provide support and guidance to the family, which is in a vulnerable situation. Regardless of neurological reactions presented by the patients this practice helps reconstructing the meanings of the daily life of person with so severe disability. Sensory stimuli are shown as potential tools for a rehabilitation practice. Memory, history, identity, dignity, and subjectivity qualify the assistance for people with LTNC.