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

• Published in: British journal of nursing (Mark Allen Publishing) Vol. 26; no. 6; p. 356
• Main Authors: Dieplinger, Anna, Kundt, Firuzan Sari, Lorenzl, Stefan
• Format: Journal Article
• Language: English
• Published: England 23.03.2017
• Subjects: Caregivers; Hospice and Palliative Care Nursing; Humans; Neurodegenerative Diseases - nursing; Nurse's Role; Nurse-Patient Relations; Professional-Family Relations; Trust; Differences in care; Palliative care; Caregiver burden; Neurodegenerative diseases; Cancer
• ISSN: 0966-0461
• DOI: 10.12968/bjon.2017.26.6.356

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.