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

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’.

Palliative Sedation at Home: A Scoping Review

“…45 The results indicated that PS is sometimes perceived as something belonging to the sphere of assisted dying, but probably more so in Quebec (Canada) and Flanders (Belgium) than in Oregon (USA). 45 The researchers argue that, to a significant degree, this may be related to the fact that assisted dying in Oregon can be self-administered, occurring mostly without the involvement of health professionals beyond lethal prescribing. On the other hand, physicians' involvement with assisted death in Quebec and Flanders is “practical” and continues until death.…”

“…On the other hand, physicians' involvement with assisted death in Quebec and Flanders is “practical” and continues until death. 45 The authors conclude that, regardless of the country where the participants were interviewed, the relief of suffering emerges as a concept- key in both PS and assisted death, however, both interventions can also be perceived as a way to exacerbate suffering. 45 It is important to note that, according to the European Association for Palliative Care, “in terminal sedation the intention is to relieve intolerable suffering, the procedure is to use a sedating drug for symptom control and the successful outcome is the alleviation of distress.…”

“…44 Despite theoretical attempts to separate these practices, PS and assisted death have been shown to be intertwined in practice. 45 A study was carried out with the objective of investigating the relationship between 2 specific aspects of the medicalization of dying: continuous and deep PS until death, and assisted dying in cities in 3 different countries (Belgium, USA and Canada). 45 The results indicated that PS is sometimes perceived as something belonging to the sphere of assisted dying, but probably more so in Quebec (Canada) and Flanders (Belgium) than in Oregon (USA).…”

“…45 A study was carried out with the objective of investigating the relationship between 2 specific aspects of the medicalization of dying: continuous and deep PS until death, and assisted dying in cities in 3 different countries (Belgium, USA and Canada). 45 The results indicated that PS is sometimes perceived as something belonging to the sphere of assisted dying, but probably more so in Quebec (Canada) and Flanders (Belgium) than in Oregon (USA). 45 The researchers argue that, to a significant degree, this may be related to the fact that assisted dying in Oregon can be self-administered, occurring mostly without the involvement of health professionals beyond lethal prescribing.…”

‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil

“…Bereaved study participants in Ireland spoke of the vigil as a significant time of farewell, through '…its reciprocity or mutuality', suggesting its importance to all parties (Donnelly & Battley, 2010: 98). Dying is often described as medicalised, with professional institutions and practitioners having an over-influential role in decision making and orchestrating the end of life (Koksvik et al, 2020). The vigil is one possible way of attempting to reclaim dying on behalf of both the family and the dying person, and as a way of affirming bonds in readiness for the post-death period (Valentine, 2007).…”