Medicalisation, suffering and control at the end of life: The interplay of deep continuous palliative sedation and assisted dying.

Gitte Hanssen Koksvik,Sheri Mila Gerson,David Clark,Naomi Richards,Lars Johan Materstvedt

doi:10.1177/1363459320976746

Gitte Hanssen Koksvik, Sheri Mila Gerson + Show 3 more

Open Access

https://doi.org/10.1177/1363459320976746

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Abstract

Medicalisation is a pervasive feature of contemporary end of life and dying in Western Europe and North America. In this article, we focus on the relationship between two specific aspects of the medicalisation of dying: deep continuous palliative sedation until death and assisted dying. We draw upon a qualitative interview study with 29 health professionals from three jurisdictions where assisted dying is lawful: Flanders, Belgium; Oregon, USA; and Quebec, Canada. Our findings demonstrate that the relationship between palliative sedation and assisted dying is often perceived as fluid and complex. This is inconsistent with current laws as well as with ethical and clinical guidelines according to which the two are categorically distinct. The article contributes to the literature examining health professionals’ opinions and experiences. Moreover, our findings inform a discussion about emergent themes: suffering, timing, autonomy and control – which appear central in the wider discourse in which both palliative sedation and assisted dying are situated, and which in turn relate to the wider ideas about what constitutes a ‘good death’.

Highlights

In Western Europe and North America, dying is increasingly preceded by clinical decision-making and most people die in medical institutions (Cohen et al, 2007; Rietjens et al, 2012)
Our findings reveal a relationship between palliative sedation and assisted dying that is fluid and inconsistent both across and within jurisdictions
The reasons given for the opposition are the ethical principle of respect for life, that governments should prioritise investment in good palliative care, symptom control and social support which reduce requests for assisted dying, and that public demand for legalising assisted dying is fuelled by fundamental misconceptions about suffering at the end of life (Inbadas et al, 2017)

Summary

Introduction

In Western Europe and North America, dying is increasingly preceded by clinical decision-making and most people die in medical institutions (Cohen et al, 2007; Rietjens et al, 2012). Palliative sedation is controversial and is generally considered an extreme measure to be undertaken only in prescribed circumstances (Materstvedt and Bosshard, 2009; Rietjens et al, 2018). In Belgium, for example, which features in this study, a 2013 nationwide survey found that it was used in 12% of all deaths (Robijn et al, 2016). This notwithstanding, it is difficult to compare studies of the prevalence of sedation because different definitions of sedation are used by researchers (Arantzamendi et al, 2020; Kremling and Schildmann, 2020; Ten Have and Welie, 2014) and because palliative sedation and the medications employed is not necessarily documented

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