Soins palliatifs et médecine

Abstrait

It was as Good as it Could be A Family Members Non-Experiences of Guilt and Shame in End-Of-Life Care

Harstade CW and Andershed B

Objective: This study is part of a larger project, “Guilt and shame in end-of-life care – the next-of-kin’s perspective”. The aim was to explore and interpret a family member’s situation without feelings of guilt and shame and describe reasons for non-experiences of these feelings. Methods: An exploratory case study was employed to investigate and achieve an in-depth, in context understanding of the phenomenon from an informant directly involved in the activities being studied. The data material consisted of two in-depth interviews, analyzed in a hermeneutic way in accordance with Gadamer. Result: Seven subthemes appeared “The mother received good care with clear planning”, “They became aware of the inevitable death”, “The mother knew how she wanted things to be”, “Mutual understanding and care between mother and daughter”, “They could make the most of the time that was left”, “The family was together during the dying”, and “Both the daughter and her mother could handle and see meaning in the situation”. These subthemes resulted in a main theme: “There wasn’t much we could have done differently. It was as good as it could be”. Three interpretations emerged that can decrease the risk of feelings of guilt and shame: 1) knowing that the loved one is receiving professional care of good quality, 2) family awareness of the situation and trusting and supportive relationship with the professionals, and 3) inner and external resources and open communication with each other. Conclusion: The study shows the importance of professionals being involved in the family situation, having the courage to be sensitive towards the patient’s and the family member’s requests in situations where there is dying and death. Being aware of the suggested interpretations can decrease the risk of feelings of guilt and shame.