Day-to-day care in palliative sedation: Survey of nurses’ experiences with decision-making and performance

Abstract

Context

Continuous palliative sedation has been the focus of extensive international debates in the field of end-of-life decision making. Although nurses may be important participants in the performance of continuous palliative sedation, research has focused primarily on the role and experience of physicians. Nurses’ experiences differ from that of physicians; they more often describe that continuous palliative sedation is used with the intention of hastening death and to have experienced serious emotional burden. Therefore, it is important to understand the experience of nurses in continuous palliative sedation.

Objective

To describe nurses’ experiences with the decision-making and performance of continuous palliative sedation in terminally ill patients.

Methods

Cross-sectional study. In 2008, a structured questionnaire was sent to 576 nurses in six professional home care organizations, ten units for palliative care in nursing homes and in-patient hospices and seven hospitals in the western region of the Netherlands. Respondents provided information about the last patient receiving continuous palliative sedation whom they had cared for.

Results

Two-hundred seventy-seven questionnaires were returned and 199 (71.84%) reported a case of continuous palliative sedation. Nurses felt involved in the decision to use sedation in 84% of cases, albeit to a lesser extent in home care (68.75%, p = 0.002). They agreed with the performance of continuous palliative sedation in 95.97% of cases and they proposed the use of continuous palliative sedation in 16.16%. Nurses were present at the start of sedation in 81.40% of cases and reported physicians to be present in 45.22%. In 72.77%, arrangements had been made among caregivers about the coordination of health care regarding the sedation.

Conclusion

Nurses seem to play an important role in the use of continuous sedation. This role is mainly supportive toward physicians and patients during the decision-making process, but shifts to an active performance of sedation, particularly in settings where they explicitly participate as members of a team. Nurses could develop the practice of palliative sedation by anticipating procedural obstacles in the performance of continuous palliative sedation. We recommend them to become more active participants in the decision-making to improve the care of patients receiving continuous palliative sedation.

Introduction

Since 2000, palliative sedation has been defined in the literature as the intentional lowering of consciousness in the last phase of life. This description is used throughout this paper although a single clear cut definition is lacking (Claessens et al., 2008, Rietjens et al., 2009). Palliative sedation can be distinguished in intermittent palliative sedation for the temporary relief of suffering and continuous palliative sedation until death, which is usually considered to be more far-reaching in palliative care.

In the Netherlands palliative sedation was introduced as a normal medical practice through the establishment of a national medical guideline that was first published in 2005 and updated later in 2009 (KNMG, 2009). The guideline distinguishes palliative sedation from euthanasia, the latter being regulated by law in the Netherlands. It says that continuous deep palliative sedation differs from euthanasia in that its aim is not to shorten life (Legemaate et al., 2007, van der Heide et al., 2007). Furthermore, the guideline not only includes recommendations on medications for palliative sedation but also it seeks to provide recommendations about the decision-making process and coordination of health care, which may help Dutch physicians with the provision of good medical practice in palliative care (Sheldon and Dutch Medical Association, 2009). There is now general consensus that palliative sedation can be used to treat severe refractory physical symptoms at the end of life, however, the treatment of psychosocial or existential suffering with palliative sedation remains controversial (Claessens et al., 2010).