 | Sophie Bruinsma MSc, PhD candidate - Erasmus Medical Center |
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04.03.2014-28.03.2014
UNBIASED (UK Netherlands Belgium International Sedation Study): The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients. A clinical, ethical and societal approach
There is a great need for evidence-based decision-making at the end of life. This holds especially for controversial, frequently used last resort treatments like palliative sedation, which are difficult to study in regular randomized controlled trials. While most studies about end-of-life care focus on the perspective of caregivers, the UNBIASED study includes the perspectives of relatives as well, which will offer a more comprehensive picture. Being a close relative of someone who is in the final phase of life is often complicated. Relatives must handle both their own sorrow and that of the dying person, in addition to addressing a multitude of practical issues. Professionals working in palliative care stress the importance of good care for the relatives of the patient. This can also be seen through the World Health Organization’s definition of palliative care. The WHO considers the wellbeing of relatives as an explicit aim of end-of-life care. The importance of relatives’ wellbeing is also reflected in guidelines about palliative sedation. So far, however, relatives receive surprisingly little attention in end-of-life research while their experiences will define how they will approach their own death. The aims of the questionnaire study, were I will focus on during my stay in Geneva, are to understand the experiences of decedents’ informal caregivers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. Research questions are: • What is the patient’s quality of dying after the use of palliative sedation as rated by relatives? • What is the effect of palliative sedation on the wellbeing of relatives during sedation and after the patient’s death? • What characteristics are associated with the wellbeing of relatives during sedation and after the patient’s death?
international study (the UNBIASED study) that explores the perspectives of clinical staff and bereaved informal caregivers on the use of continuous sedation until death for cancer patients. My Ph.D. research specifically focuses on the experiences of relatives with continuous
sedation at the end of life.
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