Documenting End of Life Care Preferences

Following up on yesterday's post about ICU dashboards, I think it is equally important to document end of life care preferences in the electronic health record.   The HIT Standards Committee has been charged in 2013 with developing the standards for structured data capture of end of life care preferences.

At BIDMC, we've already designed an approach in conjunction with the Institute for Healthcare Improvement's Conversation Ready project.

Conversation Ready is a collaborative effort between the Institute for Healthcare Improvement (IHI) and a handful of "pioneer" institutions, of which BIDMC is one, to ensure that we're ready to 1. receive/elicit patients' goals of care or preferences, 2. record them in our systems, 3. retrieve them when needed, and thereby 4. do a better job respecting them.

As a healthcare system, the US is not currently very good at doing these things, and there is a strong push to get better. To that end, it is one of BIDMC's Annual Operating Goals to become Conversation Ready, and we have a large team working to do this, which includes: the Senior VP for Quality Improvement, the Director of Ethics and Palliative Care Programs the Medical Director of Inpatient Quality, the Director of Performance Assessment & Regulatory Compliance, the Director of Social Work and Patient/Family Engagement, Patient Advisors, Associate Chief Nursing Officer of Ambulatory & Emergency Services, a Palliative Care and HCA Primary Care Physician, and several IT professionals.

A BIDMC hospitalist is the project director, and a BIDMC communications manager serves as the project manager.  We've been meeting for about 5 months now, and in addition to the IT solutions presented in these slides, we're collecting stories and data to motivate conversations, as well as developing training modules, scripts and other materials to improve our ability have these conversations.

The slides reflect the team's preliminary vision of how to improve the way we record patients' wishes around end-of-life care and retrieve them when needed.  We believe that becoming "conversation ready" requires a centralized place to store this information which is accessible from all our clinical applications.  The slides also outline a system for managing PDFs of paper Advance Care Planning documents (e.g. Proxy forms, Advance Care Directives, letters to family members, DNR/MOLST forms) that would enable us to effectively store, update and retrieve them as needed, thus capturing all the work and time that were put into creating those documents and enhancing our ability to best respect our patients wishes.  Ultimately we hope that this Advance Care Planning data could become part of health information exchanges to ensure a shared mental model across care settings.

Reflecting on my father's recent experience with end of life care, such an approach would have ensured his wishes were widely understood and respected.

I look forward to the project.