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Neurology International Open 2017; 01(03): E117-E126
DOI: 10.1055/s-0043-108438
Review
© Georg Thieme Verlag KG Stuttgart · New York

New Structures in Neurology: Palliative Care for Neurological Patients

Heidrun Golla
1   Department of Palliative Medicine, University Hospital of Cologne
,
Gereon Fink
2   Department of Neurology, University Hospital of Cologne
3   Cognitive Neurosciences, Institute of Neurosciences and Medicine (INM-3), Research Center Jülich
,
Roman Rolke
4   Department of Palliative Medicine, Faculty of Medicine of RWTH Aachen University
,
Stefan Lorenzl
5   Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria
6   Department of Neurology and Palliative Medicine, Hospital Agatharied GmbH, Hausham
7   Department of Palliative Medicine, University Hospital of Munich LMU
,
Markus Ebke
8   Neurological rehabilitation center (NRZ) Bad Salzuflen, Bad Salzuflen
,
Thomas Montag
1   Department of Palliative Medicine, University Hospital of Cologne
,
Ralf Gold
9   Department of Neurology, University Hospital, St. Josef Hospital, Faculty of Medicine, Ruhr University Bochum
,
Gereon Nelles
10   NeuroMed Campus Hohenlind, Joint Practice of Neurology, Special Pain Therapy, Rehabilitation, Cologne
,
Carsten Eggers
11   Department of Neurology, University Hospital of Giessen and Marburg, Marburg
,
Raymond Voltz
1   Department of Palliative Medicine, University Hospital of Cologne
12   Center for Integrated Oncology Cologne/Bonn (CIO), Cologne
13   Center for Clinical Studies, Cologne University Hospital (ZKS), Cologne
14   Center for Health Services Research, Faculty of Medicine, University of Cologne
› Author Affiliations
Further Information

Publication History

Publication Date:
18 July 2017 (online)

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Abstract

Although patients with incurable neurological diseases suffer from a variety of distressing symptoms and may die from their neurological condition and associated complications, palliative and hospice care for these patients to date remains rare. Initial estimates indicate that on average 10% of all patients suffering from a neurological disease need palliative and hospice care. However, within German neurology departments, only few physicians (on average 1.3/department) and nurses (on average 2.2./department) are specialized in palliative and hospice care and only about 3% of patients cared for in palliative or hospice care structures suffer from neurological diseases (in contrast to the approximately 80% of patients suffering from oncological diseases). This rather low number is due to the gradual increase in the awareness of palliative and hospice care needs for neurological patients and a currently predominant supply of oncological patients in palliative and hospice care structures that are primarily aimed at these patients. Correspondingly, the special aspects of neurological patients are currently not adequately addressed in the palliative training curricula of healthcare professionals. Rather, patients with advanced neurological conditions are medically cared for by general practitioners and by the existing inpatient and outpatient neurology structures, which may also offer sub-specialty services. Consequently, adequate care for severely affected neurological patients becomes difficult as soon as these patients are hardly able to visit these structures because home-based specialist treatment is currently rendered and financed only to a limited degree. Novel yet to date rare approaches, mostly of international origin, suggest that these patients may benefit from specialized home-based services, combining neurological and palliative care expertise. At present, data that characterizes the situation of neuro-palliative care in Germany remains scarce. In addition to the already known supply gaps (e. g., low rate of neurologists trained in palliative medicine as well as of nurses working in neurology trained in palliative care, lack of consideration of the specific (care) needs of neurological patients in general and specialized palliative and hospice care structures, few available home-based outpatient specialists) research is a prerequisite to identify current gaps in palliative care of neurological patients in more detail and how these might be overcome in the future.

Key words

palliative care - neurological diseases - healthcare structures
 

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