Background: Patients with advanced head and neck cancer are at risk of malnutrition, affecting quality of life due to the tumour location and side effects of cancer treatment. As a result, nutrition is likely to deteriorate as the disease progresses. Objectives: To explore healthcare professionals’ experiences of managing nutrition in patients with advanced head and neck cancer. Designs: A descriptive qualitative design was adopted using semi-structured interviews during which the complexity, factors and decision-making processes involved in nutritional management were explored in depth. Interviews were conducted over video call and analysed using reflective thematic analysis. Settings/subjects: Twenty-one healthcare professionals from the United Kingdom, including Dietitians, Clinical Nurse Specialists and Speech and Language Therapists, were interviewed. Results: Four themes were identified: (1) The importance of individualised nutritional care; (2) Complex decision-making regarding feeding tubes which included prognosis, patient preferences and the ‘window of opportunity’; (3) Differing expectations and experiences of patients and family; (4) Shifting nutritional priorities. Conclusions: The management of nutrition for patients with advanced head and neck cancer is complex. Healthcare professionals are required to consider multiple factors when providing nutritional support to patients. This includes making complex decisions around what enteral feeding tubes should be used and when, navigating the dynamics between patients and family, managing changing nutritional goals with disease progression and creating a nutritional plan reflecting individual needs and preferences. Further research is needed to strengthen shared decision-making frameworks, refine the understanding of the ‘window of opportunity’ and develop a core outcome.
Background: Delirium in the last days of life is common. Inconsistent terminology in clinical practice is common and recognised internationally. Whether this adversely affects management is a concern, but unknown. Aim: We explored how hospice staff talk about delirium, agitation or withdrawal in the last days of life and whether the language used influences practice. Design: Secondary analysis of qualitative data. Setting/participants: 25 clinicians from two hospices, including doctors, nurses, healthcare assistants and allied health professionals. Results: Two themes were generated; (i) Understanding and communicating delirium and agitation and (ii) the influence of terminology on patient care. The term ‘delirium’ was not commonly used in practice, instead, patients’ behaviour was described, especially by non-medical staff. Use of ‘delirium’ seemed to be associated with more transparent decision-making regarding assessment and management, even in the last days of life when this was tailored for prognosis. When terms such as ‘terminal’, ‘agitation’ and ‘confusion’ were used, the use of sedatives for agitation received more emphasis. The importance of non-pharmacological approaches was recognised but close to death these were limited by the perceived need for sedation. Hypoactive delirium was poorly identified, rarely named, with little discourse relating to its management in the dying phase. Conclusion: We found novel evidence that terminology used appeared to affect delirium management. Establishing a shared consistent and clear terminology could enhance patient and family care and staff confidence. Further research is needed to develop evidence-based guidelines for identifying and managing delirium in the last days of life.
Background: Symptom burden at the end of life in dementia remains high. While Namaste Care may enhance comfort, its effect on symptoms during the last week of life has not been established. Aim: To assess the frequency of symptoms experienced by nursing home residents with dementia during the last week of life, and to evaluate the delivery of Namaste Care Family during the last week of life and its effect on comfort and symptom burden. Design: This mixed-methods study combined quantitative data from a cluster-randomised controlled trial with semi-structured interviews. Symptoms were assessed using the End-of-Life in Dementia (EOLD) Scales – Symptom Management (SM; family perspective) and Comfort Assessment in Dying (CAD; staff perspective). Multilevel analyses examined the effect of the Namaste Care Family programme on symptom burden. Interview data was analysed using a content analysis. Setting/participants: Ten nursing homes implemented the Namaste Care Family programme, while nine provided usual care. During the study, 103 of 231 residents with moderate to advanced dementia died (47 intervention group, 56 control group). Interviews ( N = 32) were conducted with family caregivers, staff and volunteers. Results: Serenity (80%), discomfort (72%), and pain (70%) were most frequently observed. The programme had no significant effect on symptom burden (EOLD-SM −0.14 points, 95% CI −5.25, 4.96, p = 0.96; EOLD-CAD 0.35 points, 95% CI −1.98, 2.68, p = 0.77). Interviews showed difficulties in implementing the programme during the last week of life. Conclusions: Comfort and distressing symptoms were both present at the end-of-life phase with dementia. The Namaste Care Family programme did not influence this. Clinical Trial Registration: This trial was registered with the CCMO Research with human participants (ID 5692/5570).
