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.

Heterogeneity and changes in preferences for dying at home: a systematic review

“…The findings revealed complex negotiations between family and patients about moving into a nursing home (often dictated by need rather than preference); the use of the patient’s personal historical identity and previous wishes to guide decision-making in the absence of overt preferences; and difficulties for the family in balancing the patient and their own wishes. Studies conducted in Canada, Japan and Denmark, mainly about cancer patients, showed that in some situations a preference for home was dyadic and equally important to patients and caregivers [48,49]; the result of a ‘mutual pact’ or promise to the patient, sometimes made in the context of a hospital admission or involving reciprocate care [50,51]. Some caregivers expressed a sense of achievement when the patient died at home, whilst others felt lack of choice, guilt and sorrow, depending on the outcome [50,51].…”

“…Studies conducted in Canada, Japan and Denmark, mainly about cancer patients, showed that in some situations a preference for home was dyadic and equally important to patients and caregivers [48,49]; the result of a ‘mutual pact’ or promise to the patient, sometimes made in the context of a hospital admission or involving reciprocate care [50,51]. Some caregivers expressed a sense of achievement when the patient died at home, whilst others felt lack of choice, guilt and sorrow, depending on the outcome [50,51]. In Morecambe Bay (UK), Thomas et al studied the preferences of 41 patients with advanced cancer and found they were strongly influenced by an assessment of caregivers’ capacity to care, irrespective of caregivers’ expressed desire to do it [52].…”

“…Qualitative research showed distinctive conceptual features of preferences for place of care and for place of death [40,50,72,73]. A “definite” or “desperate” desire to remain at home as long as possible, with the ultimate hope to die at home or until admission if required, was viewed as dignifying if by the time the move happened the person was not aware of it anymore [50,72].…”

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources

“…Over time, some carers did identify with the term carer, yet others rejected it completely [26]. Some caregivers preferred to be self-sufficient, feeling that they did not yet need help [24], or that support from external paid carers was a potential intrusion [27,33]. Furthermore, acknowledging the caregiving role meant recognising that the ill person needed to be cared for [26].…”

“…Carers may be engulfed by the process and unable to access support because they do not have sufficient time, or are fearful of leaving the cared-for person [33,37]. Carers may also be concerned about diverting resources to themselves at the expense of the cared-for person [38].…”