Background: The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. Aim: To identify and map out the palliative care needs and experiences for people with advanced head and neck cancer. Design: A scoping literature review following the methods described by the Joanna Briggs Institute. Data sources: An electronic search of the literature was undertaken in MEDLINE (Ovid), EMBASE and CINAHL covering the years January 1996 to January 2019. Results: People with advanced head and neck cancer often had palliative care needs but there was variability in the timing and access to relevant services. A high prevalence of interventions, for example hospital admissions were needed even during the last month of life. This was not necessarily negated with early engagement of palliative care. Dissonance between patients and family carers about information needs and decision-making was an additional complexity. Studies tended to be descriptive in nature, and often involved a single centre. Conclusion: This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.
Living with and Dying from Advanced Head and Neck Cancer: A Scoping Review to Assess Experiences and Unmet Needs