Social ecology of suffering in end-of-life illness: Ethical dimensions of relational agency and decision making in marginalized communities

The call for a more humanistic, person-centered interdisciplinary palliative care practice with vulnerable individuals who are suffering in end-of-life illness is growing . Suffering as a social and public health problem with ethical dimensions for seriously ill patients, their families and communities has received scant attention in the social science and medical literature. Our understanding of suffering experiences as fundamentally social and relational, and our responses to suffering persons as members of communities have been limited by knowledge inquiry that has often failed to recognize the centrality of relationships and ethics to the experience of suffering . This phenomenological study aimed to investigate the structure of suffering experiences of seriously ill persons in a nursing home palliative care setting in an urban community. The results of the study provide beginning evidence that experiences of suffering have a horizon structure that originates in the patient's primal interpersonal relationship with maternal dimensions of existence and one's rootedness in the home and community. The loss of a maternal structure and supportive home surroundings, and removal from intimate relations with family, caregivers and community constituted core meanings of suffering for the study participants. Desire for spiritual well-being and the activation of agentic processes motivated adaptive and resilient responses to suffering and a recovery of the maternal structure, helping seriously ill persons fulfill the meanings of their spiritual intentionalities even in their suffering. The contribution of this study is in expanding consciousness of suffering, and improving collaborative practices with suffering persons, especially in marginalized communities.