Abstract
Neurological expertise in palliative care may be required not only for patients with primary neurological disorders but also for patients with non-neurological diseases suffering from burdensome neurological symptoms. The aim of this study was to determine the prevalence of neurological diagnoses and symptoms in palliative care patients, as well as the related burden and impact on everyday life. We analyzed retrospectively the medical records of 255 consecutive patients from a tertiary medical center, at the time point of referral to an inpatient palliative care consultation service. In addition, 100 patients prospectively answered a questionnaire which included the assessment of neurological symptoms, as well as numeric rating scales for quality of life, symptom-specific burden, and restrictions in everyday life. Forty-one patients (16%) suffered from a primary neurological disease. Most decisions regarding the termination of life-sustaining measures concerned this group (20/22, 91%). Neurological symptoms (excluding pain) were documented in 122 patients (48%) with an underlying non-neurological disease. In the questionnaire study, 98/100 patients reported at least one neurological or neuropsychiatric symptom, most frequently sleeping problems (N = 63), difficulty concentrating (N = 55), and sensory symptoms (N = 50). Vertigo/dizziness (N = 19) had the greatest impact on everyday life (7.57/10 ± 2.17) and the highest symptom-specific burden (7.14 ± 2.51). Difficulty concentrating (restrictions in everyday life/burden) and pain intensity were the only symptoms significantly correlated with quality of life (r = -0.36, p = 0.009/r = -0.32; p = 0.04; r = -0.327, p = 0.003). Neurological diseases and symptoms are frequent among palliative care patients and are often associated with a high symptom burden, which may severely affect the patients' lives. It is thus of paramount importance to implement neurological expertise in palliative care.
Highlights
Palliative care aims to provide physical, psychosocial, and spiritual care for terminally ill patients and their families
Care concepts for people with motor neuron diseases may be an encouraging example of the successful integration of palliative care and neurology, many patients with neurodegenerative, neuro-oncological as well as neurovascular diseases still have a wide range of unmet palliative care needs [9, 10]
We found that almost half of the palliative care patients without a primary neurological disease had neurological symptoms documented in their charts, and 98% of patients in the prospective study reported at least one burdensome neurological/ neuropsychological symptom
Summary
Palliative care aims to provide physical, psychosocial, and spiritual care for terminally ill patients and their families. Several reviews advocate a better integration of palliative care in the overall care of patients with neurological diseases [7,8,9]. Both neurological and palliative care expertise are required, e.g., for patients with intracranial processes in order to assess prognosis, to substantiate decisions on the withholding or withdrawal of life-sustaining measures and to help the family understand the nature of an imminent persistent vegetative state or brain death. Neurological expertise in palliative care may be required for patients with primary neurological disorders and for patients with non-neurological diseases suffering from burdensome neurological symptoms. The aim of this study was to determine the prevalence of neurological diagnoses and symptoms in palliative care patients, as well as the related burden and impact on everyday life
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