Background Few studies take a qualitative perspective on decision-making surrounding sedation practice in end of life care for cancer patients. The UNBIASED study (UK Netherlands Belgium International Sedation Study) comprises three linked studies in the UK, Belgium and the Netherlands. This paper reports preliminary UK findings.
Aim To examine what specialist palliative care doctors and nurses understand by sedation in end of life care for patients with cancer, and their experiences with the practice.
Methods Profession specific focus groups with doctors and nurses working in specialist palliative care settings (two hospices; one hospital support team). Data were analysed with the aid of NVivo, taking a constant comparison approach.
Findings 43 staff (25 nurses and 18 doctors; range of palliative care experience from 8 months to 29 years) took part in six focus groups. Sedation was seen as an aspect of clinical treatment required for many patients, often for the relief of anxiety or to aid ‘time out’ from distress. Continuous sedation (as opposed to ‘as required’) was reported as a treatment for terminal agitation, to keep patients safe and comfortable. Using continuous deep sedation for refractory symptoms with the explicit intent of reducing consciousness prior to death was an occasional experience. Some found decision-making difficult when patients expressly requested sedation or where suffering was primarily existential. Offering the option of sedation to patients was seen as an important means of acknowledging their suffering. Where patients lacked capacity, staff sought to make decisions by team consultation and in the light of family concerns. Barriers to sedation practice included negative attitudes of other staff and patients families and a desire not to be thought to be hastening death.
Conclusion These findings inform patient centred case studies in the next phase of this study in hospice, hospital and community sites.
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