Experiences and perceptions of continuous deep sedation: An interview study among Dutch patients and relatives

Abstract Background The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. Objective To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. Met... Mehr ...

Verfasser: Jonker, Louise Annemoon
Heijltjes, Madelon T.
Rietjens, Judith A. C.
van der Heide, Agnes
Hendriksen, Geeske
van Delden, Johannes J. M.
van Thiel, Ghislaine J. M. W.
Dokumenttyp: Artikel
Erscheinungsdatum: 2023
Reihe/Periodikum: Health Expectations ; volume 27, issue 1 ; ISSN 1369-6513 1369-7625
Verlag/Hrsg.: Wiley
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27467879
Datenquelle: BASE; Originalkatalog
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Link(s) : http://dx.doi.org/10.1111/hex.13869

Abstract Background The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS. Objective To describe perceptions and experiences of patients and relatives with regard to CDS. This insight may help professionals and policymakers to better understand and respond to the evolving practice of CDS. Methods Qualitative interviews were held with patients and relatives who had either personal experience with CDS as a relative or had contemplated CDS for themselves. Results The vast majority of respondents appreciated CDS as a palliative care option, and none of the respondents reported (moral) objections to CDS. The majority of respondents prioritized avoiding suffering at the end of life. The patients and families generally considered CDS a palliative care option for which they can choose. Likewise, according to our respondents, the decision to start CDS was made by them, instead of the physician. Negative experiences with CDS care were mostly related to loss of sense of agency, due to insufficient communication or information provision by healthcare professionals. Lack of continuity of care was also a source of distress. We observed a variety in the respondents' understanding of the distinction between CDS and other end‐of‐life care decisions, including euthanasia. Some perceived CDS as hastening death. Conclusion The traditional view of CDS as a last resort option for a physician to relieve a patient's suffering at the end of life is not explicit among patients and relatives. Instead, our results show that they perceive CDS as a regular palliative care option. Along with this normalization of CDS, patients and relatives claim a substantial say in the decision‐making and are mainly motivated by a wish to avoid suffering ...