Emerging Trends in Neuropalliative Care: A Palliative Approach to Epilepsy and Seizure Management in Adults.

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.

Alterations in neural Theory of Mind processing in euthymic patients with bipolar disorder and unaffected relatives.

OBJECTIVES: Behavioral deficits in the Theory of Mind (ToM) have been robustly demonstrated in bipolar disorder. These deficits may represent an intermediate phenotype of the disease. The aim of this study was: (i) to investigate alterations in neural ToM processing in euthymic patients with bipolar disorder, and (ii) to examine whether similar effects are present in unaffected relatives of patients with bipolar disorder suggesting that ToM functional activation may be, in part, due to genetic risk for the disease. METHODS: A total of 24 euthymic patients with bipolar disorder, 21 unaffected first-degree relatives, and 81 healthy controls completed a ToM task while undergoing functional magnetic resonance imaging. RESULTS: We observed reduced bilateral activation of the temporoparietal junction (TPJ) and diminished functional fronto-temporoparietal connectivity in patients compared to controls. Relatives tended towards intermediate temporoparietal activity and functional coupling with medial prefrontal areas. There was also evidence for a potentially compensatory enhanced recruitment of the right middle temporal gyrus and stronger connectivity between this region and the medial prefrontal cortex in relatives. CONCLUSIONS: These findings provide further evidence of altered neural ToM processing in euthymic patients with bipolar disorder. Further, our findings in relatives lend support to the idea that altered ToM processing may act as an intermediate phenotype of the disorder.

The First Neuropalliative Care Unit in Germany-Characteristics of Patients.

A unique structure of care for neurological inpatients with significant palliative care (PC) needs was established in the Department of Neurology at the Charité-Universitätsmedizin Berlin in 2021: a specialized neuropalliative care (NPC) unit. After one year, we provide an overview of the concept and the patients' characteristics. METHODS: We retrospectively analyzed the characteristics of patients treated in our NPC unit between February 2021-February 2022. Data were extracted from medical records and PC assessment including diagnosis, mode of admission and discharge, length of stay, and palliative symptoms. Data are presented as averages with a 95% confidence interval [lower limit; upper limit] or percentage (absolute number). RESULTS: We included 143 patients (52% (75) female, 67.9 years [65.6; 70.2]). Patients were admitted from general wards (48%; 68), their homes (22%; 32), intensive care units (16%; 23) or emergency departments (14%; 20). The main diagnoses were tumors of the nervous system (39%; 56), neurodegenerative diseases (30%; 43), neurologic complications (13%; 19) and cerebrovascular diseases (12%; 17). Complaints most frequently rated as severely to overwhelmingly burdensome were motor- or fatigue-associated problems, problems communicating, dysphagia and pain. The average length of stay was 13.7 days [12.2; 15.2]. Forty-five percent (64) of patients were discharged without further PC, 17% (24) were referred to a hospice and 13% (18) were discharged with outpatient PC. Five percent (7) were referred to neurorehabilitation and 21% (30) of patients died. CONCLUSIONS: Our NPC unit is a new model of care for neurological patients with substantial PC needs especially within the structures of a highly specialized and individualized medicine.

Burdens and Resources of Staff of a Specialized Ward for Neuropalliative Care: A Cross-Sectional Survey.

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.

Causes for Emergency Hospitalization of Neurological Patients With Palliative Care Needs.

Background: Acute and unexpected hospitalization can cause serious distress, particularly in patients with palliative care needs. Nevertheless, the majority of neurological inpatients receiving palliative care are admitted via an emergency department. Objective: Identification of potentially avoidable causes leading to acute hospitalization of patients with neurological disorders or neurological symptoms requiring palliative care. Methods: Retrospective analysis of medical records of all patients who were admitted via the emergency department and received palliative care in a neurological ward later on (n = 130). Results: The main reasons for acute admission were epileptic seizures (22%), gait disorders (22%), disturbance of consciousness (20%), pain (17%), nutritional problems (17%), or paresis (14%). Possible therapy limitations, (non)existence of a patient decree, or healthcare proxy was documented in only 31%. Primary diagnoses were neoplastic (49%), neurodegenerative (30%), or cerebrovascular (18%) diseases. Fifty-nine percent were directly admitted to a neurological ward; 25% needed intensive care. On average, it took 24 h until the palliative care team was involved. In contrast to initially documented problems, key challenges identified by palliative care assessment were psychosocial problems. For 40% of all cases, a specialized palliative care could be organized. Conclusion: Admissions were mainly triggered by acute events. Documentation of the palliative situation and treatment limitations may help to prevent unnecessary hospitalization. Although patients present with a complex symptom burden, emergency department assessment is not able to fully address multidimensionality, especially concerning psychosocial problems. Prospective investigations should develop short screening tools to identify palliative care needs of neurological patients already in the emergency department.