A Randomized Controlled Trial of Strategies to Improve Family Members’ Preparedness for Surrogate Decision-Making

Abstract

The disconnect between confidence and performance raises questions about how to prepare family members to be surrogate decision-makers.

Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

“…Prior works have described the importance of good communication skills of healthcare providers to sufficiently prepare FC for substitute decision-making [15] and discussions around end-of-life care decisions [41]. Strategies to improve FCs' preparedness include the use of online tools for advance care planning [42] or palliative care-led family meetings [43]. Ethical guidance for healthcare providers to optimize relationships with FC that also address communication in palliative care and end-of-life scenarios are available [7].…”

Family Caregivers’ Characterization of Conversations Following an ACP Event

“…16 Although not a focus of this qualitative analysis, we did not detect differences between caregivers' responses in the alone versus together groups, a finding consistent with the published quantitative results of the parent study comparing the 2 groups. 17 Caregivers often mentioned prior caregiving experiences (most often caring for a parent). Thus, our findings may suggest that future interventions and clinical tools aimed at improving patient-family communication about end-of-life wishes would be most valuable to caregivers who have not had prior experience with caregiving and medical decision-making.…”

Patient Preference to Accept Medical Treatment Is Associated with Spokesperson Agreement

“…Patients were eligible if they received medical care at Penn State Hershey Medical Center or Brigham and Women's Hospital, were at least 18 years old and had either class III or IV congestive heart failure, stage III or IV chronic obstructive pulmonary disease, chronic kidney disease stage 4 or 5, or advanced cancer. Full descriptions of selection criteria, recruitment, randomization, and the interventions were published previously (5).…”

“…To date, few variables have strong independent associations with spokesperson-patient agreement rates, and more work is needed to understand the sources of this disconnect (2). We compared agreement between patient and surrogate responses when patients chose to "accept" versus "decline" treatment in a randomized trial evaluating online ACP tools (5).…”