Being a Family in the Midst of Living and Dying

Abstract

The aim of this study was to illuminate the way of being a family when one family member is in the midst of living and dying. A family systems frame and a life world perspective were used in interviews with five families. A qualitative analysis inspired by Giorgi revealed dialectic and dynamic processes in constant motion within and between the continua being in affinity-being in loneliness, being in power-being in helplessness, and being in continuity-being in disruption. When families were moving in the direction of being in affinity, power, and continuity, these seemed to be prerequisites for enduring their challenged life situation and for giving them a kind of repose. When the movements were in the opposite direction, existential and emotional suffering were manifested as individual embodied experiences such as depression and anxiety. Resume I Cette etude avait pour objectif de mettre en tumtere la facon d'etre d'une famille alors qu'un de

Living in the Presence of Death: An Integrative Literature Review of Relatives’ Important Existential Concerns when Caring for a Severely Ill Family Member

“…Other experienced that they had come to terms with life, mortality and death. All this aroused feelings of awareness and reconciliation of life situation as well as overwhelming feelings of their failings and losses [26]. …”

“…When patients suffering from dementia no longer could communicate, relatives experienced feelings of loneliness because they had no one to talk to [27], and consequently communication regarding life and death sometimes became difficult [26]. Relatives felt lonely when they had to take responsibility for all practical matters and they had feelings of isolation.…”

“…It was not uncommon with experiences of existential loneliness in certain changes and circumstances during the disease trajectory [22]. Sometimes the situation was easier to endure when they were able to share their thoughts and feelings with the patient, which generated strength [26]. Other times the relative and the patient felt that they could not protect each other from suffering.…”

“…Sometimes they felt helpless, not having enough resources to manage the situation and found it difficult to know how to act in certain situations. Their trust in relations with healthcare staff was limited, the care provided was not helpful, and there was an unbalance between demands and expectations [26]. Feelings of anger directed towards the disease and healthcare staff were imminent [22].…”

The Impact of Family Communication Patterns on Hospice Family Caregivers

“…Most terminally-ill patients use this time to discuss spiritual and psychosocial matters not previously broached between family members 3 . Families with open communication prior to the disease maintain the pattern throughout the illness as the situation prompts families to view this as a time to be together 4 . However, not all families are able to have open conversations about dying and death.…”