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.
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: Eefje M Sizoo; H Roeline W Pasman; Linda Dirven; Christine Marosi; Wolfgang Grisold; Günther Stockhammer; Jonas Egeter; Robin Grant; Susan Chang; Jan J Heimans; Luc Deliens; Jaap C Reijneveld; Martin J B Taphoorn Journal: Support Care Cancer Date: 2013-12-14 Impact factor: 3.603
Authors: Siobhan Fox; Alison Cashell; W George Kernohan; Marie Lynch; Ciara McGlade; Tony O'Brien; Sean S O'Sullivan; Suzanne Timmons Journal: BMC Palliat Care Date: 2016-02-09 Impact factor: 3.234
Authors: Ruth Piers; Gwenda Albers; Joni Gilissen; Jan De Lepeleire; Jan Steyaert; Wouter Van Mechelen; Els Steeman; Let Dillen; Paul Vanden Berghe; Lieve Van den Block Journal: BMC Palliat Care Date: 2018-06-21 Impact factor: 3.234