TY - JOUR
T1 - Continuous Palliative Sedation in Nursing Home Residents With Dementia and Refractory Neuropsychiatric Symptoms
AU - Veldwijk-Rouwenhorst, Annelies E.
AU - Smalbrugge, Martin
AU - Zuidema, Sytse U.
AU - Hanssen, Suzan A.J.
AU - Koopmans, Raymond T.C.M.
AU - Gerritsen, Debby L.
N1 - Funding Information:
This work was supported by the Netherlands Organisation for Health Research and Development (ZonMw) (Grant 839120001 ). The sponsor of this study had no role in the design, methods, subject recruitment, data collection and analysis, and preparation of this paper.
Publisher Copyright:
© 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/2
Y1 - 2021/2
N2 - 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.
AB - 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.
KW - Continuous palliative sedation
KW - dementia
KW - neuropsychiatric symptoms
KW - nursing home
UR - http://www.scopus.com/inward/record.url?scp=85098118498&partnerID=8YFLogxK
U2 - 10.1016/j.jamda.2020.11.004
DO - 10.1016/j.jamda.2020.11.004
M3 - Article
C2 - 33275905
AN - SCOPUS:85098118498
VL - 22
SP - 305-311.e4
JO - Journal of the American Medical Directors Association
JF - Journal of the American Medical Directors Association
SN - 1525-8610
IS - 2
ER -