A Representational Intervention to Promote Preparation for End-of-life Decision Making

Dialysis is central to survival for 450,000 Americans with end-stage renal disease (ESRD).
Yet patients on dialysis have significant comorbidities and high mortality rates (24%
annually). One out of four ESRD patient deaths occurs after a decision to stop dialysis.
However, when persons have lost their decision capacity if there has been no prior discussion
between the patient and surrogate regarding goals of care, the issue of whether to continue
dialysis can pose an ethical impasse and cause profound psychological distress for surrogate
decision makers. Using the representational approach to patient education, we developed and
pilot tested the SPIRIT intervention (Sharing the Patient's Illness Representation to
Increase Trust) to improve discussions about end-of-life care between patients and their
surrogate decision makers. SPIRIT is a 6-step, 2-session, face-to-face intervention presented
to both patient and surrogate by a trained interventionist in an interview format.

The proposed randomized controlled trial will test the effects of the SPIRIT intervention in
improving preparedness for end-of-life decision making among ESRD patients and their
surrogates and reducing surrogates' conflict during decision making and psychosocial
morbidities. Subjects will be 200 Caucasian and African-American patients with ESRD recruited
from outpatient dialysis clinics and their chosen surrogate decision makers. Preparedness
outcomes (dyad congruence, patient decisional conflict, and surrogate decision making
confidence) will be measured at 2, 6, and 12 months post-intervention. Surrogate decisional
conflict and psychosocial morbidities (anxiety, depression, and post-traumatic distress
symptoms) will be measured 2 weeks after the patient's hospitalization that required
surrogate decision making. To compare the effects of SPIRIT to those of standard care on
surrogates after the patient's death, psychosocial morbidities will be measured at 3 and 6
months after the patient's death. We will also explore the potential impact of race on
intervention effects and examine mediators and moderators of the intervention effects.

Inclusion Criteria:

for patients,

- self-identified Caucasian or African American;

- receiving either center-hemodialysis or home-peritoneal dialysis for at least 6 months
prior to enrollment;

- availability of an individual chosen by the patient who can be present during the
intervention as a surrogate decision maker;

- age 18 years or older;

- ability to participate in health care decisions as evidenced by less than 3 errors on
the Short Portable Mental Status Questionnaire (SPMSQ), suggesting normal mental
functioning;

- ability to read, write, and speak English.

- a CCI score of ≥6;

- hospitalization in the last 6 months, a CCI score of 5, including congestive heart
failure (CHF).

for surrogates,

- age 18 years or older (to serve as a surrogate decision maker, the individual must be
an adult);

- willingness to serve as the surrogate decision maker and participate in the
intervention with the patient;

- ability to read, write, and speak English.

Exclusion Criteria:

-Patients who are too sick to participate in an hour-long interview, who require special
care and assistance, who would not be able to care for their needs will be excluded.