Being present in hospital when the patient is dying - A grounded theory study of spouses experiences

PurposeAlthough 50% of cancer patients in Norway die in a hospital setting, there has been little research exploring how family members experience their presence at the hospital during their loved ones last days before death.This study aimed to gain an in-depth understanding of these experiences, and to advance knowledge for improving palliative care in relation to caregivers.MethodA grounded theory design was used, with data derived by interviews with 8 female spouses.ResultsThe data revealed a core category defined as Maintaining presence – for the other and for one’s own sake, embracing four categories - to find one’s place, to know, to support each other and to terminate. The core category represents the couple’s need to keep continuity in the relationship, physically and emotionally, even when the patient is admitted to hospital.ConclusionsThis study displays the importance that health care workers acknowledge and organize for family members to be able to spend time or cohabit with patients admitted to hospitals at the terminal stage. This may increase family members’ sense of empowerment and coping, and positively influence how they experience the period both before and after the death of their loved ones.