Dignity: a qualitative study on the views of patients, relatives and health professionals

BACKGROUND: Research has shown that dying with dignity is often used as an equivalent of ‘good death’, and that the lack of dignity may lead to requests of euthanasia. However there is no agreed definition of dignity in palliative care. AIMS: To investigate and compare the views on dignity of the patients, professionals and informal carers in a palliative care setting. METHODS: Qualitative methods were used. Three focus groups were carried out and data was analysed using framework analysis and a dignity model for palliative care. RESULTS: Differences and similarities between the three populations were found. Similarities include the importance of the care tenor, compassion, communication and respect in the relationship between patient/relative and professionals, and the negative impact of undignified care in the patients and relatives experience of care. The differences between groups lay in the emphasis on the different categories. Relatives seem to give more importance to care tenor; patients seem to give lower importance to illness related issues or vulnerability than the other groups; health care providers seem to be more focused on the importance communication skills and vulnerability, and find it difficult to offer personal examples. CONCLUSIONS: Dignity is perceived by these populations as something inherent to good quality care and that goes beyond mere privacy and respect, which are considered a base for dignified care. It is considered a complex, dynamic construct which is very affected by interaction and involves human, compassionate and individualised treatment, as well as control, choice and autonomy. The importance given to care tenor in all groups showed how the staff attitudes greatly shape the patients and relatives experience of dignity. The lack of a universal definition of dignity in palliative care makes research on the topic challenging, and this needs to be addressed.Image used: Copyright Peter Hujar Estate and Matthew Marks Gallery, New York, which represents the artist's estat