238417 Social ecology of suffering in end-of-life illness: Ethical dimensions of relational agency and decision making in marginalized communities

Tuesday, November 1, 2011: 8:30 AM

Mary E. Morrissey, JD, MPH , Fordham Ravazzin Center on Aging, Fordham Graduate School of Social Service, West Harrison, NY
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.

Learning Areas:
Provision of health care to the public
Public health or related public policy
Public health or related research
Social and behavioral sciences

Learning Objectives:
1.Describe lived experiences of suffering of seriously ill patients at the end of life who are members of marginalized communities. 2. Explain the social, relational and agentic dimensions of suffering in decision making. 3. Discuss the centrality of ethics to suffering experiences and empathic care responses to suffering persons in the context of community.

Keywords: End-of-Life Care, Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to be an abstract author on the content I am responsible for as I practice in health care as an attorney and concentrate my practice to palliative and end of life care, and I am also a PhD candidate in gerontology and concentrate my research in the area in which I am presenting, i.e., suffering and end of life illness/decision making.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.