Palliative care nursing for patients with neurological diseases: what makes the difference?

Abstract

Neurodegenerative diseases progress slowly, creating increasing physical disability with unpredictable disease trajectories. The disease's life-threatening nature often places these patients in palliative care. There are several factors that complicate the care of patients with neurodegenerative diseases in palliative care units. Owing to physical impairments, there are many communication barriers between patients and staff. Nurses are not able to duplicate the patient's meticulous daily routine leading to caregiver mistrust in the nurse's competencies. Even if the patient is hospitalised, caregivers may not take the much-needed time off to recuperate. The placement of patients with neurodegenerative diseases in palliative care is confusing, since they rarely die during in-hospital treatment but might even get better due to multidisciplinary treatment. Finally, patients and caregivers lack adequate knowledge about disease progression and available help and support programmes. Patients with neurodegenerative diseases urgently need palliative care and nurses and caregivers need better preparation to appropriately deal with these diseases.

Update on Palliative Care for Pediatric Neurology

“…20 Finally, caregivers may not understand the full range of possible disease trajectory leading to lack of trust. 36 Research evaluating existing biases by pediatric neurology and pediatric palliative care providers is an important first step to designing interventions that can successfully lead to increased utilization and efficacy of palliative care.…”

Analysis of nursing assessment terminology for neurological conditions and its cross‐mapping with the International Classification of Functioning, Disability and Health (ICF): A multi‐centre cross‐sectional study

“…However, due to the systemic nature of neurological diseases and their high requirements for nursing records, patients with neurological diseases are in urgent need of an accurate and comprehensive nursing assessment terminology. (Dieplinger et al, 2017).…”