Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease

Abstract

Although recent studies have focused on life-sustaining treatment (LST) decision-making by families, research has not examined such decision-making as an aspect of ongoing caregiving by family caregivers. This article focuses on factors associated with family caregiver role strain and ease in LST decision-making. Using content analysis, factors were derived from interview data gathered from 17 family caregivers who had made LST decisions for 16 elderly ill relatives. The factors are incorporated in a framework, The Family Caregiving Process in Making LST Decisions for Elderly Ill Relatives, and fall under four key roles--caregiver, elderly ill relative, other family members, and health care providers. Factors affecting the strain and ease felt by family caregivers exist not only during the actual decision-making period, but also arise during the days, months, and years prior to the event and continue on after the LST decisions have been made. Nurses' knowledge of these factors can help nurses decrease family caregiver strain and increase ease during the family caregiver LST decision-making process.