RT Journal Article SR Electronic T1 Challenges faced by patients, relatives and clinicians in end-stage dementia decision-making: a qualitative study of swallowing problems JF Journal of Medical Ethics JO J Med Ethics FD BMJ Publishing Group Ltd and Institute of Medical Ethics SP e39 OP e39 DO 10.1136/medethics-2020-106222 VO 47 IS 12 A1 Joseph Dimech A1 Emmanuel Agius A1 Julian C Hughes A1 Paul Bartolo YR 2021 UL http://jme.bmj.com/content/47/12/e39.abstract AB Background Decision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.Aim This study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.Method The study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.Results Four themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.Conclusion Decision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.All data relevant to this article are derived from JD's doctoral research titled 'Moral Reasoning in End of Life Clinical Decision Making for Persons in End Stage Dementia'. The thesis is openly available for viewing at the Melitensia Section of the University of Malta Library.