Models of moral reasoning in end of life : clinical decision-making for persons in end-stage dementia

Abstract

Clinical decision-making in the end-of-life of older adults in end-stage dementia is a complex issue, with a composite interplay between clinical, social, legal and ethical issues. End-stage dementia seriously hinders the affected person’s physical and cognitive capabilities and leaves the patient unable to participate in decision-making regarding their health. The emotionally involved family and clinicians are faced with complex ethical dilemmas as they have to take the responsibility to decide for the patient how to proceed as the patient starts experiencing life-threatening swallowing difficulties. This study was an attempt to understand what ethical models if any, do underpin the decisions of clinical teams and other stakeholders when the patient in end-stage dementia experiences severe life-threatening swallowing difficulties. This question was investigated through a qualitative case-study approach. Participants were six different clinical teams and involved families who went through the decision-making process on how to address the swallowing difficulties of six different patients at St Vincent de Paul LTCF. Data consisted of retrospective semi-structured interviews with each member of the team and relatives who participated or was entitled to participate in the decision. All data were transcribed and subjected to a qualitative thematic analysis. The study showed that the professionals and family members found it hard to decide whether the person would benefit from tube feeding with the intent to prolong life, or else from a comfort-seeking approach to oral feeding to promote dying with dignity. They used different ethical care models in each case. Some cases gave rise to strong discord among the clinicians and relatives, with the involvement of conflicting values and different interpretations given to beneficence, non-maleficence, sanctity-of-life and quality-of-life, raising questions as to how far the whole process maintained a patient-centred approach. In other cases, all stakeholders were included in a consensus-building approach that appeared to safeguard better the patient’s dignity and interests in care. The findings revealed the need for the introduction of care practice guidelines and advanced directives to safeguard the patient by regulating better planning and interventions in end-stage dementia care. Furthermore, it is suggested that professional guidelines should promote a consensus-building approach as the best way of ensuring a patient-centred and ethically appropriate decision-making process.