Descriptions by general practitioners and nurses of their collaboration in continuous sedation until death at home: in-depth qualitative interviews in three European countries

Abstract

Context: One palliative care approach that is increasingly being used at home for relieving intolerable suffering in terminally ill patients is continuous sedation until death. Its provision requires a multidisciplinary team approach, with adequate collaboration and communication. However, it is unknown how general practitioners (GPs) and home care nurses experience being involved in the use of sedation at home.

Objectives: To present case-based GP and nurse descriptions of their collaboration, roles, and responsibilities during the process of continuous sedation until death at home in Belgium, The Netherlands, and the U.K.

Methods: We held in-depth qualitative interviews with 25 GPs and 26 nurses closely involved in the care of 29 adult cancer patients who received continuous sedation until death at home.

Results: We found that, in Belgium and The Netherlands, it was the GP who typically made the final decision to use sedation, whereas in the U.K., it was predominantly the nurse who both encouraged the GP to prescribe anticipatory medication and decided when to use the prescription. Nurses in the three countries reported that they commonly perform and monitor sedation in the absence of the GP, which they reported to experience as "emotionally burdensome."

Conclusion: We found variety among the countries studied regarding the decision making and provision of continuous sedation until death at home. These differences, among others, may be the result of different organizational contexts in the three countries such as the use of anticipatory medication in the U.K.

Keywords: Palliative sedation; collaboration; continuous sedation until death; general practitioners; home; nurses.