Grant R03CA138131

Therapeutic Pathways to Improving End of Life Outcomes Among Families in Palliati

DESCRIPTION (provided by applicant): Project Description As patients with advanced cancer approach the end of life (EOL), the family becomes a crucial resource. Facing multiple caregiving demands, family members are at risk for higher rates of depression and anxiety during this phase of illness [1, 2]. Previous studies on EOL care have elicited patient and family perspectives on what constitutes a "good death" [4]. In addition to pain and symptom management, relational concerns were prevalent in these accounts [4,5]. Priorities included spending time with family, confiding in loved ones, saying goodbye, and ensuring that the family is prepared for the future [6, 7]. Research in this area has culminated in the development and validation of measurement tools to assess these EOL-specific experiences [7]. However, there has been little specification of what helps families achieve these desired outcomes. Family Focused Grief Therapy (FFGT) is an evidence-based intervention developed in recognition of the need for family-centered support at the EOL. An objective of FFGT is to foster better communication (i.e., disclosure) among family members about cancer-related concerns and anticipated loss. However, the hypothesis that promoting better communication among family members will help them achieve desired EOL outcomes remains largely untested. The first aim of this study is to test this crucial assumption in the context of an ongoing randomized controlled trial of FFGT. We will examine whether changes in family members'cancer-related disclosure during sessions of FFGT is associated with improved EOL outcomes. To explain the link between disclosure and EOL outcomes, we further investigate putative mediators of this association. Research on processes of change in family therapy has identified two key dimensions of family alliance: (1) Therapeutic safety (i.e., comfort with communication in family sessions) and (2) Within-family collaboration (i.e., shared purpose and cohesion in family sessions) [11]. We hypothesize that cancer-related disclosure will bear its impact on EOL outcomes through systemic changes in these aspects of family alliance. To further explore factors that influence the benefits of disclosure, we will test the moderating effects of therapist characteristics (engagement of family, emotional connection to family and facilitation of therapeutic safety) and individual family member characteristics (e.g., sex, relationship to patient, global distress, time until death) on the association between disclosure and EOL outcomes. The results of this study will provide an evidence-based explanation of how and for whom a family-centered approach produces improves EOL outcomes. This study will further inform clinical practice by specifying what therapeutic elements need to be in place for families to benefit from supportive care at the EOL. PUBLIC HEALTH RELEVANCE: PROJECT NARRATIVE Care of the dying patient has increasingly become a family affair. The use of home-based hospice services has grown considerably over the last decade, with nearly 40% of all deaths in the U.S. served by hospice in 2007 [103]. Most terminally ill cancer patients and family caregivers prefer that death occur in the home [104]. The trend toward home-based care is expected to persist as the U.S. population ages and pressures to lower health care costs increases. Active involvement of families in caring for the dying patient brings an opportunity for closeness and community at the end of life. However, when family relationships are fragmented, and communication or teamwork is difficult, home-based care is less sustainable and the likelihood of a good death is diminished [105]. Indeed, caregivers report that they want more support in managing communication and family disagreements at the end of life [106]. Whereas psycho-educational programs help prepare families for the practical demands of home-based care, few interventions are designed to help families manage the relational disruptions (e.g., poor communication) that prove challenging at the end of life. A consensus statement issued by the National Institute of Health on EOL care emphasized the importance of addressing the needs of family caregivers as they prepare for the death of a loved one [3]. Similarly, the World Health Organization's definition of palliative care includes the capacity to "offer a support system to help the family cope during the patient's illness and in their own bereavement" [16]. The proposed study examines what therapeutic elements make family-focused support beneficial to families in palliative care. Specifically, this study examines whether changes in cancer-related communication among family members promotes improved quality of life at the end of life, under what conditions these changes are most likely to occur, and what therapeutic practices make these changes most effective. Knowledge gained from this study will provide evidence-based guidelines for the support of families in the palliative care setting.