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Background:
Professionals’ personal perceptions of sedated patients in the context of palliative care may influence their opinion on sedation as treatment option. However, little is known of palliative care professionals’ perception of patients dying under sedation.
Aim:
To explore German specialist palliative care team members’ views on and perception of the dying process under sedation.
Design:
Qualitative phenomenological study using semi-structured interviews (n = 59). Interviews took place in-person after recruitment via a contact person and were transcribed verbatim. Framework Analysis was used for analysis.
Setting/participants:
Physicians, nurses, psychologists, physical therapists, chaplains, and social workers from 10 palliative care units and 7 specialist palliative homecare teams across 12 German cities.
Results:
Participants’ views on patients dying under sedation can be grouped into: (i) those who perceived an influence of sedation on the dying process with and without positive and/or negative connotations and (ii) those who saw no difference between dying with or without sedation. Positive connotations referred to the perception of sedation providing an easier path. Concerns were mainly related to the deprivation of patients regarding a conscious dying. The metaphorical description of sedation as “sleep” was common among participants.
Conclusions:
The wide range of perceptions of patients dying under sedation may be rooted in different judgements regarding aspects of a good death. Clarifying ideals of a good death with professionals, patients, and relatives before sedation may support transparent decision-making and help avoid conflicts or moral distress.
Background: Terminological problems concerning sedation in palliative care and consequences for research and clinical decision making have been reported frequently.
Objectives: To gather data on the application of definitions of sedation practices in palliative care to clinical cases and to analyze implications for high-quality definitions.
Design: We conducted an online survey with a convenience sample of international experts involved in the development of guidelines on sedation in palliative care and members of the European Association for Palliative Care (EAPC). Participants were asked to apply four published definitions to four case vignettes. Data were analyzed using descriptive statistics.
Results: A total of 32 experts and 271 EAPC members completed the survey. The definitions were applied correctly in n = 2200/4848 cases (45.4%). The mean number of correct applications of the definitions (4 points max.) was 2.2 ± 1.14 for the definition of the SedPall study group, 1.8 ± 1.03 for the EAPC definition, 1.7 ± 0.98 for the definition of the Norwegian Medical Association, and 1.6 ± 1.01 for the definition of the Japanese Society of Palliative Medicine. The rate of correct applications for the 16 vignette-definition pairs varied between 70/303 (23.1%) and 227/303 (74.9%). The content of definitions and vignettes together with free-text comments explains participants' decisions and misunderstandings.
Conclusions: Definitions of sedation in palliative care are frequently incorrectly applied to clinical case scenarios under simplified conditions. This suggests that clinical communication and research might be negatively influenced by misunderstandings and inconsistent labeling or reporting of data.
Background
The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue’s great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall (“From anxiolysis to deep continuous sedation – Development of recommendations for sedation in palliative care“) with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area.
Design
Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%.
Results
Ten experts commented on the recommendations’ first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics “indications”, “intent/purpose [of sedation]”, “decision-making”, “information and consent”, “medication and type of sedation”, “monitoring”, “management of fluids and nutrition”, “continuing other measures”, “support for relatives”, and “team support”. The recommendations include suggestions on terminology and comments on legal issues.
Conclusion
Further research will be required for evaluating the feasibility of the recommendations’ implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level.
Trial Registration
DRKS00015047 (German Clinical Trials Register)
