A Cross-cultural international study of Medical Practitioners’ Understanding and Practice of Continuous Sedation for Distress at the End of Life
The use of sedative drugs has been a part of symptom management in terminally ill patients since the earliest days of palliative care. Yet the practice remains contentious, particularly owing to a perception that, intentionally or not, sedation shortens life. As such it has been characterized as ‘slow euthanasia’ or ‘physician assisted death’. There is evidence that, at least in specialist palliative care hands, sedation does not precipitate death but elsewhere there are suggestions that there may be a link: officially reported cases of euthanasia in Belgium (where euthanasia is allowed under a system of legal scrutiny) increased at the same time that the totals of end of life sedation declined.
The overarching goal of all published definitions of sedation in end-of-life care is the relief of troublesome symptoms. A second goal is the achievement of some reduction in conscious level as the means of providing this symptom relief. Where definitions differ is whether sedation is meant to bring about unconsciousness or merely to relieve symptoms by reducing conscious level as required – which may or may not mean that the patient is rendered unconscious. This difference has emerged as a fault line between preferred practice in the UK and US, where the target sedation level is proportional to symptom intensity and that in countries such as the Netherlands, Belgium and Japan where deep sedation from the outset is more favoured.
The likelihood that sedation is understood differently in different places is also suggested by the fact that reports of the frequency of use of sedation vary from 1% of dying patients to 88%. Indeed, although guidelines are widely used to standardize and regulate sedative practice, a systematic review found them to differ markedly in terminology and in the length of prognosis that eligible patients would be expected to have.
Particular concern has been expressed regarding ‘continuous sedation’, in which a state of sedation (however defined) is maintained constantly until death. This is particularly so if the practice is accompanied by withdrawal or withholding of assisted nutrition and hydration (ANH). Because the end of life symptoms for which sedation is most often used, viz. agitation and confusion, are ongoing the use of continuous sedation with or without ANH in this context is in fact not rare, with Dunn et al. reporting from a specialist palliative care setting that 70% of instances of sedative use were continuous.
The present study is a preliminary to quantitative research regarding the use of continuous sedation, attempting a qualitative evaluation of the understanding of this practice by physicians in different countries and how it is performed.
The study has the following objectives:
- to develop a more complete understanding of how physicians in different countries and cultures comprehend the concept of continuous sedation for the relief of distress at the end of life.
- to build knowledge of how these doctors use sedation and for which patients.
This study was initiated in Japan and the Netherlands but investigators from all the other participating countries (Belgium Germany, Italy, Singapore, UK, USA) have contributed to the final version of the questionnaire which will be used in all countries.
The method of disseminating the questionnaire will vary by country, but in each case it will be targeted at physicians trained or training in Palliative Medicine or with a particular interest in this area of practice. The Association for Palliative Care Flanders will advertise to its members, without endorsement, a link to a web-based format of the questionnaire which is then completed electronically.
Results will be reported in the second half of 2019.
Prof. Dr. Luc Deliens, promotor
Prof. Dr. Judith Rietjens, lead
Lenzo Robijn, researcher