Family Experience: End of Life for a Family Member with a Chronic Illness

University Of Maryland Baltimore, Baltimore MD

Investigators

Abstract

DESCRIPTION (provided by applicant): Little is known about the science of families participating in the end of life process from patients with chronic illnesses. The purpose of this study is to describe the experience of family members participating in the processes of withholding and withdrawing LST from a family member with a life-threatening exacerbation of a chronic illness, and also to describe family member experiences during the dying process. The qualitative part of this mixed methods study will use a phenomenological perspective for injury;this study will seek to answer the question: What do family members experience during the process of withholding LST, the process of withdrawing LST, and during the dying process when a family member has a life- threatening exacerbation of a chronic illness? Preliminary quantitative data will also be collected to determine if there are changes over time in anxiety, stress, and depression experienced by family members and to determine what percentage of family members are at risk for post-traumatic stress. Van Manen's phenomenological approach will be used to guide the qualitative part of the investigation. In depth audiotaped interviews will be conducted with family members and observation techniques will be employed. Multiple interviews and observations will be conducted over a period of days to weeks as families participate in the end of life process. All adult critical care units of two metropolitan medical centers will be potential data collection sites. Purposive sampling will be used to obtain the families. The goal of purposive sampling will be to select families with typical and atypical experiences. Families will be enrolled into the study until redundancy is achieved. The sample will include 26 families. All interview transcripts and filed notes will be transcribed. Van Manen's (1984) selective approach will be used to identify units of meaning, clusters or themes, and categories as they emerge from the data. Methodological rigor will be determined. Quantitative and qualitative data will be compared. Based on the results of this study nurses and physicians will have an understanding of the experience of the family when a family member with a life-threatening exacerbation of a chronic illness dies after life-sustaining therapy is withheld and withdrawn. Future studies will test interventions that health care providers can use to improve care to patients dying in critical care and their families. Improving end of life care will optimize the well being of families. Improving end of life care is an NIH/NINR priority. PUBLIC HEALTH RELEVANCE: This study will assist nurses, physicians, and other health care providers to understand the experience of families as they participate in end of life treatment decisions for a family member with a life-threatening exacerbation of a chronic illness. It has the potential of defining factors contributing to good and problematic family experiences as family members participate in the process of withholding life-sustaining therapy, the process of withdrawing life-sustaining therapy, and the dying process. The results of this study will guide health care providers in interventions to aid families during end of life care. The results of the study will be published and presented in local and national meetings to health care professionals and others who would benefit from information related to how to help these vulnerable family members.