CSDM: A Trial to Improve Communication and Shared Decision Making Using a Web-Based Tool

Roughly 600,000 Americans annually die in or shortly after an ICU admission, generally after
decisions by surrogates to forego life support. Several decades of research indicate:

1. Family members in ICUs often struggle in the role of surrogate and experience high rates
of lasting psychological sequelae (e.g. depression, anxiety, PTSD). For example, a
systematic review found that one third of surrogates have long term feelings of guilt
and doubt about the decisions they made.

2. Patients often receive treatment that is inconsistent with their values and preferences.
For example, in the SUPPORT trial, physicians were frequently unaware of patients'
wishes regarding end-of-life care, and patients often died receiving more invasive
treatment than they preferred.

3. Intensive care near the end of life is a significant contributor to health care costs.
For example, medical care in the last year of life accounts for 25% of Medicare costs,
and ICU care contributes substantially.

Breakdowns in clinician-family communication in ICUs are common and an important target for
interventions. Using quantitative analysis of audiorecorded goals of care discussions in
ICUs, we found that in more than 50% of conversations clinicians did not inquire about the
patient's values and treatment preferences, and in a similar proportion failed to explicitly
offer alternatives to indefinite life-prolonging treatment, such as time-limited trials or
comfort-focused treatment. We have also documented frequent omissions of important prognostic
information during such conversations and other researchers have documented that surrogates
often hold unduly optimistic estimates of patients' prognosis. These data highlight the
importance of improving the quality of collaborative decision making in ICUs.

This proposal is responsive to national research priorities: The proposed research addresses
priority areas for national action from the Institute of Medicine and NIH: improving
clinician-family communication and end-of-life care for patients with advanced organ system
failure. It is responsive to calls by the Institute on Aging to promote patient-centered
decision making for elderly patients.

A critical barrier to addressing these problems is the absence of a scalable intervention. No
empirically validated decision support tools exist for the range of critical illnesses
confronted in ICUs. Prior interventions to address these problems (e.g., proactive palliative
care consultation or adding a family support counselor to the ICU team) face major barriers
to dissemination due to projected palliative care workforce shortages and the high cost of
adding more personnel to ICU care teams.

A pragmatic, scalable intervention to overcome these problems has been developed. This pilot
study among surrogates and clinicians of 50 incapacitated patients will assess the
feasibility of deploying the web-based tool as well as to examine the tools impact on
measures of communication and decision quality.

Inclusion Criteria:

- Surrogate decision maker for ICU patient that lacks decisional capacity

- Permission from Patient's ICU Primary Attending Physician

Exclusion Criteria:

- Non-English Speaking

- Inability to read or write