Annelies E Veldwijk-Rouwenhorst1, Martin Smalbrugge2, Sytse U Zuidema3, Suzan A J Hanssen4, Raymond T C M Koopmans5, Debby L Gerritsen6. 1. 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. 2. Department of General Practice and Elderly Care Medicine, Amsterdam Public Health Research Institute, Amsterdam University Medical Centers Location VUmc, Amsterdam, the Netherlands. 3. Department of General Practice and Elderly Care Medicine, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands. 4. Department of Primary and Community Care, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, the Netherlands; Radboudumc Alzheimer Center, Nijmegen, the Netherlands. 5. Department 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," Center for Specialized Geriatric Care, Nijmegen, the Netherlands. 6. 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: debby.gerritsen@radboudumc.nl.
Abstract
OBJECTIVES: Extreme 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. DESIGN: A qualitative interview and explorative study was performed. SETTING AND PARTICIPANTS: Relatives, 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. METHODS: Consecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis. RESULTS: Nine 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 IMPLICATIONS: The 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.
OBJECTIVES: Extreme 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. DESIGN: A qualitative interview and explorative study was performed. SETTING AND PARTICIPANTS: Relatives, 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. METHODS: Consecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis. RESULTS: Nine 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 IMPLICATIONS: The 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.
Authors: Annelies E Veldwijk-Rouwenhorst; Sytse U Zuidema; Martin Smalbrugge; Anke Persoon; Raymond T C M Koopmans; Debby L Gerritsen Journal: BMC Geriatr Date: 2022-09-16 Impact factor: 4.070
Authors: Margaretha T Dijk; Sarah Tabak; Cees M P M Hertogh; Rob M Kok; Rob J van Marum; Sytse U Zuidema; Eefje M Sizoo; Martin Smalbrugge Journal: Age Ageing Date: 2022-09-02 Impact factor: 12.782