title: Discussions about treatment restrictions in chronic neurologic diseases: a structured review.
abstract: OBJECTIVE
  Many incurable neurologic diseases have predictable complications during their course or at their end stage. Timely discussions of potential treatment restrictions may improve the quality of treatment decisions toward the end of life. What is known about the actual practice of these discussions?
  
  
  METHODS
  We performed a literature search in MEDLINE, EMBASE, and CINAHL for empirical studies about discussions and decisions to restrict treatment in the course of 6 conditions: motor neuron disease (amyotrophic lateral sclerosis [ALS]), primary malignant brain tumors, multiple sclerosis, stroke, Parkinson disease, and dementia (Alzheimer disease).
  
  
  RESULTS
  In 10 of 43 studies, the actual practice of decision-making was studied; in the remaining 33, caregivers were interviewed about this practice. Three scenarios were described: 1) acute devastating disease (severe stroke); 2) stable severe neurologic deficit with complications (poststroke brain damage); and 3) chronic progressive disease with complications (dementia and ALS). We found no studies concerning the other conditions. In all 3 scenarios, discussions and decisions seemed to be mostly triggered by the occurrence of life-threatening situations, either caused by the disease itself (1), or complications (2 and 3, including many patients with ALS). Some ALS studies showed that timely discussion of treatment options improved end-of-life decision-making.
  
  
  CONCLUSIONS
  The actual practice of discussions about treatment restrictions in chronic neurologic disease has hardly been studied. The currently available empirical data suggest that discussions are mainly triggered by life-threatening situations, whereas anticipation of such situations may be beneficial for patients and their families.
authors.affiliation: Department of Neurology, Academic Medical Center, University of Amsterdam, The Netherlands. a.a.seeber@amc.uva.nl
authors.forename: Antje A
authors.initials: AA
authors.lastname: Seeber
authors.forename: Albert
authors.initials: A
authors.lastname: Hijdra
authors.forename: Marinus
authors.initials: M
authors.lastname: Vermeulen
authors.forename: Dick L
authors.initials: DL
authors.lastname: Willems
mesh_terms: D002908:Chronic Disease; D003657:Decision Making; D006801:Humans; D009422:Nervous System Diseases / Q000628:therapy*; D011368:Professional-Family Relations; D013727:Terminal Care