Preparing Family Caregivers to Make Medical Decisions for Their Loved Ones

The long-term goal is to help family caregivers of seriously ill patients be better prepared
to serve as surrogate decision-makers when their loved ones can no longer make medical
decisions for themselves. Research shows that family caregivers find surrogate
decision-making highly stressful and emotionally burdensome, in part because they feel
unprepared for surrogate decision-making. To date, no studies have determined which advance
care planning (ACP) process best prepares caregivers for this role. The investigators' prior
work shows that a computer-based decision aid can help patients make more informed decisions
and communicate their wishes more effectively. The investigators now propose to determine if
family caregivers of patients with life-threatening illnesses are better prepared for
surrogate decision-making: 1) when they engage in a structured ACP process together with
patients; and 2) when they use this online decision aid for ACP. This will be accomplished
via a randomized, controlled trial with a 2 x 2 factorial design comprising 4 groups:
Standard ACP/Patient Alone (Group 1), Decision Aid/Patient Alone (Group 2), Standard
ACP/Patients and Caregivers Together (Group 3), and Decision Aid/Patients and Caregivers
Together (Group 4).

Inclusion Criteria:

1. 18 years of age or older

2. Diagnosis of kidney disease (e.g. chronic kidney disease, end stage renal disease ) OR
advanced cancer (Stage IV disease or having an estimated survival of <2 years) OR
severe heart failure (e.g. New York Heart Assoc. Class III or Class IV) OR severe lung
disease (e.g. Stage III or Stage IV COPD by modified GOLD Spirometric Classification,
Idiopathic Pulmonary Fibrosis).

3. Able to read and understand English at an 8th grade level (word 26 on either blue or
tan version of the WRAT-3 reading subtest)

4. Neuro-cognitively able to engage in ACP (Mini Mental State Exam (MMSE) score >23)

5. No active suicidal ideations (i.e., score of 0 or 1 on item 9 of the BDI-II).

Exclusion Criteria:

- Failure on any of the above inclusion criteria.