Abstract

Simple SummaryThe involvement of patients in decision making about their healthcare plans is being emphasized, but little is known how the decision making on palliative sedation is conducted and who are involved in. The aim of this study is to understand how decisions about palliative sedation are taken. The results may help to understand the reality of this decision-making considering when and by whom the decision-making process is initiated, patient involvement, family involvement and healthcare involvement. This may contribute to identifying aspects that should be improved.Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.

Highlights

  • To obtain a preliminary understanding of how the sedation process occurs in clinical practice in different settings and countries, this study aims to analyze the information available in prospective studies on decision-making process in palliative sedation

  • This study analyzes the data available on the decision-making process of palliative sedation reported in recent prospective studies included in a systematic review on clinical aspects of palliative sedation

  • The European Association for Palliative Care framework presents recommendations for the decision-making process indicating the importance of the active discussion about palliative sedation between patient, family and healthcare professional (6)

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Summary

Introduction

Shared decision making engages patients in their illness trajectory, encouraging their participation on deciding about treatment, or follow-up. It integrates the best available evidence and patients’ values and preferences during the illness [2]. Studies identified a subset of patients who wanted to delegate decisions. It is important for healthcare professionals to start regular communication about decision making preferences during the disease trajectory. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services

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