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. 2024 Dec 21;23(1):295.
doi: 10.1186/s12904-024-01612-2.

Decision-making about palliative sedation for patients with cancer: a qualitative study in five European countries linked to the Palliative sedation project

Michael Van der Elst  1 , Sheila Payne  2 , Maria Arantzamendi  3   4 , Nancy N Preston  5 , Ian Koper  6 , Alazne Belar  3   4 , Holger Brunsch  7 , Séverine M Surges  7 , Claudio Adile  8 , Yasmine Grassi  8 , Zoe Cockshott  5 , Jeroen Hasselaar  9 , Johan Menten  1 ; Palliative Sedation Consortium
Affiliations

Decision-making about palliative sedation for patients with cancer: a qualitative study in five European countries linked to the Palliative sedation project

Michael Van der Elst et al. BMC Palliat Care. .

Abstract

Background: Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professionals to provide good patient care but there remains controversy on how it is used. Little is known about decision-making processes regarding this procedure. The aim of this study was to explore decision-making processes in palliative sedation based on the experiences and perceptions of relatives and healthcare professionals.

Methods: We conducted a qualitative interview study with dyads (a bereaved relative and a healthcare professional) linked to 33 deceased patient with cancer who had palliative sedation, in seven in-patient palliative care settings in five countries (Belgium, Germany, Italy, the Netherlands, and Spain). A framework analysis approach was used to analyse the data.

Results: Two main themes are defined: 1) Decision-making about palliative sedation is a complex iterative process, 2) Decision-making is a shared process between the patient, healthcare professionals, and relatives. Decision-making about palliative sedation appears to follow an iterative process of shared information, deliberation, and decision-making. The patient and healthcare professionals are the main stakeholders, but relatives are involved and may advocate for, or delay, the decision-making process. Starting palliative sedation is reported to be an emotionally difficult decision for all parties.

Conclusions: As decision-making about palliative sedation is a complex and iterative process, patients, relatives and healthcare professionals need time for regular discussions. This requires a high level of engagement by healthcare professionals, that takes into account patients' wishes and needs, and helps to facilitate decision-making.

Keywords: Cancer; Decision-making; Europe; Health personnel; Palliative Care; Palliative Sedation; Qualitative research.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The study was conducted in compliance with The Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. The protocol was approved by the following ethical committees: the University Hospital of Leuven EC Onderzoek UZ/KU Leuven (s63865), the Research Ethics Committee of the Radboud University Medical Centre in Nijmegen (Netherlands), Comité de ética de la investigación, Universidad de Navarra (Spain) (nº 2020.168), Ethikkommission der Medizinischen Fakultät Bonn (Germany) and Comitato Etico Palermo (Italy). All methods were carried out in accordance with relevant guidelines and regulations. Informed consent was obtained from all participants. Consent for publication: Participants provided informed consent for publication of the quotes. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Flow chart of recruitment of participants
Fig. 2
Fig. 2
Flow chart of analysis
Fig. 3
Fig. 3
Iterative process of decision-making in palliative sedation
Fig. 4
Fig. 4
Process of shared decision-making
See this image and copyright information in PMC

References

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