Making sense of continuous sedation in end-of-life care for cancer patients: an interview study with bereaved relatives in three European countries

• Published in: Supportive care in cancer 2014-12, Vol.22 (12), p.3243-3252
• Main Authors: Bruinsma, S. M., Brown, J., van der Heide, A., Deliens, L., Anquinet, L., Payne, S. A., Seymour, J. E., Rietjens, J. A. C.
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Anesthesia; Belgium; Bereavement; Cancer; Cancer patients; Comparative studies; Conscious Sedation - methods; Conscious Sedation - psychology; Cross-Cultural Comparison; Decision Making; Ethnopsychology; Families & family life; Family - psychology; Female; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - psychology; Neoplasms - therapy; Netherlands; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original Article; Pain Medicine; Palliative care; Palliative Care - methods; Palliative Care - psychology; Palliative treatment; Qualitative Research; Rehabilitation Medicine; Terminal Care - methods; Terminal Care - psychology; United Kingdom
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-014-2344-7

Purpose The purpose of the study was to explore relatives’ descriptions and experiences of continuous sedation in end-of-life care for cancer patients and to identify and explain differences between respondents from the Netherlands, Belgium, and the UK. Methods In-depth interviews were held between January 2011 and May 2012 with 38 relatives of 32 cancer patients who received continuous sedation until death in hospitals, the community, and hospices/palliative care units. Results Relatives’ descriptions of the practice referred to the outcome, to practical aspects, and to the goals of sedation. While most relatives believed sedation had contributed to a ‘good death’ for the patient, yet many expressed concerns. These related to anxieties about the patient’s wellbeing, their own wellbeing, and questions about whether continuous sedation had shortened the patient’s life (mostly UK), or whether an alternative approach would have been better. Such concerns seemed to have been prompted by relatives witnessing unexpected events such as the patient coming to awareness during sedation. In the Netherlands and in Belgium, several relatives reported that the start of the sedation allowed for a planned moment of ‘saying goodbye’. In contrast, UK relatives discerned neither an explicit point at which sedation was started nor a specific moment of farewell. Conclusions Relatives believed that sedation contributed to the patient having a good death. Nevertheless, they also expressed concerns that may have been provoked by unexpected events for which they were unprepared. There seems to exist differences in the process of saying goodbye between the NL/BE and the UK.