• Annelies E Veldwijk-Rouwenhorst, Martin Smalbrugge, Sytse U Zuidema, Suzan A J Hanssen, KoopmansRaymond T C MRTCMDepartment of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands; Radboudumc Alzheimer Center, Nijmegen, the Netherlands; De Waalboog "Joachim en Anna," , and Debby L Gerritsen.
• Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands; Radboudumc Alzheimer Center, Nijmegen, the Netherlands. Electronic address: annelies.veldwijk-rouwenhorst@radboudumc.nl.
• J Am Med Dir Assoc. 2021 Feb 1; 22 (2): 305-311.e4.

ObjectivesExtreme neuropsychiatric symptoms can be a heavy burden for nursing home (NH) residents, relatives, and caregivers. Sometimes, when extreme neuropsychiatric symptoms are considered refractory, continuous palliative sedation is administered. The aim of this study was to explore the trajectory leading to continuous palliative sedation and its administration in NH residents with dementia and refractory neuropsychiatric symptoms.DesignA qualitative interview and explorative study was performed.Setting And ParticipantsRelatives, elderly care physicians, and other staff members involved with 3 NH residents with dementia and extreme refractory neuropsychiatric symptoms who received continuous palliative sedation were interviewed. These NH residents lived on dementia special care units of 3 NHs in the Netherlands.MethodsConsecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis.ResultsNine in-depth interviews with 13 participants were held. Analysis resulted in 6 main themes, with several subthemes reflecting phases of the continuous palliative sedation trajectory: (1) run-up, describing an unbearable struggle of the resident; (2) turning point, at which hope was lost; (3) considering continuous palliative sedation and administration of intermittent sedation; (4) decision to start continuous palliative sedation based on 1 decisive trigger; (5) administration of continuous palliative sedation with stakeholders experiencing relief; and (6) evaluation.Conclusions And ImplicationsThe trajectory leading up to continuous palliative sedation in NH residents with dementia and extreme refractory neuropsychiatric symptoms was complex and burdensome, but the initiation led to relief and contentment for all those involved. This study highlights that continuous palliative sedation can be a valuable treatment option among these residents. A recommendation is to include external consultation in the decision process and to administer intermittent sedation as a preceding step when continuous palliative sedation is considered.Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

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