513217 research-article2013

PMJ28410.1177/0269216313513217Palliative MedicineWillis et al.

Letter to the Editor Palliative Medicine 2014, Vol. 28(4) 367­–368 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216313513217 pmj.sagepub.com

A response to L. Anquinet et al.’s article on terminal sedation Dear Editor, Terminal sedation for many is a divisive and troubling term. The difficulties span definition, practice and opinion. Any research which clarifies practice and understanding is, therefore, vitally important and in the current healthcare environment needed urgently. Our concern is that the article by Anquinet et al.1 does little to help us. For a variety of reasons, clinicians use the same term, ‘sedation’, to cover contrasting interventions. Electronic searches spuriously collate this heterogeneous group as if one, while the voices of those who avoid this term are ignored, further undermining the value of the current evidence base on sedation in palliative care. Our principal, specific concern with this article is that the authors are not clear about what is meant by terminal sedation either for them, as the study group, or for the members of the focus groups. This is puzzling, since it would be the natural and logical start in addressing other interventions or diseases. For example, when one is studying diabetes, one would need to be clear it was mellitus, or insipidus, and the threshold fasting blood sugar or relative osmolality, respectively. Without agreement about what words mean, discussion is at best meaningless and at worst misleading. The authors are not alone in this as several articles that they quote are equally foggy.2 Academic reflection on the treatment and care of the dying demands every bit as much, if not more, rigour as any disease process or procedure: ones rights do not fade as death approaches. One might argue that the article is qualitative so that diagnostic criteria don’t matter and are not part of the study methodology. This is flawed reasoning. In such research, what does matter is what the term means to each person studied as inherent to interpretation and analysis. We believe that the article fails to consider carefully enough and to describe in sufficient detail, what the participants mean when they are being interviewed. For example, without specifics, especially about the intent of the prescriber, terminal sedation may mean anything. The

article advises us to ‘read these results with caution’. We suggest that without clearer details, the results cannot be read at all. The same applies to the authors’ dealing with euthanasia. On the one hand, the article did not, as it states, aim to study euthanasia (while brought up during the interviews, it was not a part of the study design), yet on the other, euthanasia appears in the study title. Why? Again we are puzzled. There is a categorical distinction, in our opinion, between terminal sedation and euthanasia because the intended outcome, drugs and doses used and the delivery of the two are entirely different. To put these terms together without distinguishing them within the study design is factually ambiguous and from a UK perspective, ethically confused. As members of the Ethics Committee of the Association for Palliative Medicine, we feel it an obligation to differentiate between a proportionate dose (of perhaps midazolam) to intervene in a crisis at the very end of life from an ongoing supratherapeutic dose with the specific intent of aneasthetising a patient in advance of what may have proved a peaceful and uneventful death. In the former careful titration of medication occurs, whereas in the latter, no such titration tends to occur. We would also wish to remind readers that sedation should never be an end in itself, not least because it robs a person of any autonomy. The use of drugs with potentially adverse sedative side effects should always be targeted and titrated against specific symptoms.3 This is true at any stage of a patient’s illness; using the right drugs at the right dose to control specific symptoms has an established term ‘symptom control’. Changing the term just when at the end-of-life, through convention or ignorance, is not necessary and not helpful. Using the term ‘sedation’ is particularly dangerous, by intuitively having more in common with, and thus inappropriately validating, use of a ‘chemical cosh’ rather than the sophisticated symptom relief that defines best practice. The subject of terminology, particularly with ‘sedation’, is difficult to disentangle, and any study’s design, intention and execution must reflect this. Without such clarity, we lose the chance to understand, and there is a risk that people’s prejudices are confirmed rather than challenged.

368 Acknowledgements All contributors are members of APM Ethics Committee.

Declaration of conflicting interests The authors declare that there is no conflict of interest.

Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

References 1. Anquinet L, Raus K, Sterckx S, et al. Similarities and differences between continuous sedation until death

Palliative Medicine 28(4) and euthansia – professional caregivers’ attitudes and experiences: a focus study group. Palliat Med 2013; 27: 553–561. 2. De Graeff A and Dean M. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. J Palliat Med 2007; 10: 67–85. 3. Association of Palliative Medicine Ethics Committee. Definition: Sedation, September 2010. Derek Willis, Craig Gannon, Tim Harlow, Idris Baker and Rob George APM Ethics Committee, Southampton, UK Corresponding author: Derek Willis, Severn Hospice, Apley Castle, Telford TF1 6RH, UK. Email: [email protected]

A response to L. Anquinet et al.'s article on terminal sedation.

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