title: Experiences of surviving spouse of terminally ill spouse: a phenomenological study of an altruistic perspective.
abstract: The aim of the study was to illuminate the experiences of surviving relatives in connection with their care at home of terminally ill, dying spouses, followed by an outline of the need for palliative assistance by the district nurse. Qualitative interviews with eight surviving relatives have been analysed on the basis of the phenomenological method. The essence of these phenomena was the loving promise to the terminally ill and dying spouse in which the shared grief, structural disintegration and powerlessness, lifelines and supporters and viable grief appeared. This promise consisted of that dying spouse will be able to stay at home during the illness and his or her desire to die at home. It was given during uncomfortable hospitalization and springing from the spouse's desire for autonomy and integrity at the end of his or her life. In keeping the promise, the surviving spouse became altruistic, neglecting his or her own primary needs in the unselfish fulfilment of the needs of the terminally ill spouse. The surviving spouse grieved in lonely isolation characterized by stress and an ethical dilemma in connection with breaching the promise. Light was shed on the professional palliative care with the surviving spouse's lacking verbalization of grief and powerlessness, regardless of whether expert professional palliation or insufficient professional palliation was provided. In that way the findings of the study showed the necessity for professional involvement in the decision concerning palliation at home, including identification of the resources of the primary caregiver.
authors.affiliation: Nordic School of Public Health (NHV), Gothenburg, Sweden. soctf@kalundborg.dk
authors.forename: Tove
authors.initials: T
authors.lastname: Fisker
authors.forename: Margaretha
authors.initials: M
authors.lastname: Strandmark
mesh_terms: D000533:Altruism; D017028:Caregivers; D006801:Humans; D015203:Reproducibility of Results; D018454:Spouses / Q000523:psychology*; D019452:Terminally Ill