Paper
Thursday, 20 July 2006
Family Healthcare Decision-Making and Self-Efficacy with ALS Patients at the End of Life
Marie Nolan, DNSc, RN, School of Nursing, Johns Hopkins University, Baltimore, MD, USA
| Learning Objective #1: Identify factors related to family end-of-life decision making in family members of patients with ALS. |
| Learning Objective #2: Explore family members' decision self-efficacy when making decisions with or for patients with terminal illness. |
PROBLEM: When considering the role of family in end-of-life decision-making, terminally ill patients' preferences range from no family involvement (independent), through shared decisions, to decisions reliant upon family. As part of a larger study of end-of-life decision-making, we found both concordance and lack of concordance between these preferences and family members’ actual involvement.
PURPOSE: To explore end-of-life decision-making and self-efficacy in families of patients with terminal amyotrophic lateral sclerosis (ALS).
DESIGN: A mixed method approach with criterion sampling was used. Patient and family Decision Control Preferences Scale responses indicating preferred and actual family involvement were used to select cases both with and without decision control concordance. Qualitative interviews were then conducted with family members to explore factors that influenced health care decisions made soon before death and their involvement in these decisions. Interviews began with broad questions about family end-of-life decision-making followed by questions about family decision making self-efficacy guided by Bandura's Self-Efficacy Theory.
SETTING AND PARTICIPANTS: Sixteen family members of patients who died of ALS being treated at a university hospital. Five family members participated in in-depth qualitative interviews.
MAIN OUTCOME MEASURES: Explanation of end-of-life decision-making and family decision-making self-efficacy when there was concordance and lack of concordance between patient control preferences and actual family involvement.
RESULTS: Patients were more likely to have family involvement that favored independent decision-making, regardless of their preferred level of family involvement. Patient needs, caregiver needs, and patient values and wishes were seen by family members as influencing the health care decisions to be made. Patient wishes and values were also seen as influencing family decision-making self-efficacy.
CONCLUSIONS: Family members are less involved in end-of-life decision-making than patients with ALS prefer. Further study is needed to test the effect of family decision-making self-efficacy on the concordance between patient control preferences and actual family involvement.
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