Paper
Saturday, November 3, 2007

51
This presentation is part of : End-of-Life Care Initiatives
Framework for Family Decision Making Self-Efficacy at the End of Life
Marie T. Nolan, PhD, RN1, Joan Kub, RN, PhD1, Mark T. Hughes, MD, MS2, Peter B. Terry, MD, MS3, Alan B. Astrow, MD4, Cynthia Carbo, MSN, APRN-BC1, Richard Thompson, PhD5, Lora Clawson, MSN, NP6, Kenneth Texeira, PhD7, and Daniel P. Sulmasy, MD, PhD7. (1) School of Nursing, Johns Hopkins University, Baltimore, MD, USA, (2) Department of Medicine, Johns Hopkins University School of Medicine and Johns Hopkins Berman Bioethics Institute, Baltimore, MD, USA, (3) Department of Pulmonary Medicine, Johns Hopkins University School of Medicine and Johns Hopkins University Berman Bioethics Institute, Baltimore, MD, USA, (4) Hematology/Oncology, Maimonides Medical Center, New York, NY, USA, (5) Department of Biostatistics, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD, USA, (6) Department of Medicine, Johns Hopkins University, Baltimore, MD, USA, (7) John J. Conley Department of Ethics, St. Vincent's Hospital Manhattan, New York, NY, USA
Learning Objective #1: describe factors that influence family members' participation in end of life care decisions.
Learning Objective #2: describe factors that influence satisfaction with the decision making experience.
PROBLEM:  Because persons with ALS commonly retain decision-making capacity close to death, patients and families may need support to facilitate family involvement in end-of-life decisions consistent with the patient's preferences. 
PURPOSE: To describe a framework of family end-of-life decision making self-efficacy.
DESIGN: This study was part of a larger study of patient and family decision making near death.  In the present study we selected family members whose actual role in decision making varied in its concordance with the patient's preferences regarding their involvement.   We then conducted in-depth qualitative interviews over the phone to explore their experience of health care decision making near death.  Interviews began with broad questions about family end-of-life decision-making followed by questions about decision making self-efficacy. Qualitative content analysis was used to develop a framework.
SETTING AND PARTICIPANTS:  Family caregivers of five patients with amyotrophic lateral sclerosis (ALS) at a university-affiliated hospital.
MAIN OUTCOME MEASURES:  Identification of factors that influence family decision making self-efficacy and satisfaction with decision making involvement.
RESULTS:  Both the patient's needs and the caregiver's needs influenced the decisions that needed to be made.  Patients' preferences regarding treatments and their desire to avoid family burden influenced both the decisions to be made and the family member's confidence in decision-making.  Similarly, health team members' communication regarding prognosis, treatment options, and palliative care influenced the decisions to be made and the family member’s self-efficacy.  Family member satisfaction with the decision-making experience was linked to their feelings of self-efficacy. 
CONCLUSIONS:  Family members identified their own needs as well as those of the patient as influencing healthcare decisions and their confidence in participating in decisions.  Health professionals can use this framework to guide further study of these factors and to gauge the satisfaction family members have with decision making near the end of their loved one’s life.

See more of End-of-Life Care Initiatives
See more of The 39th Biennial Convention (November 3 -- 7, 2007)