Wednesday, May 22, 2013

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.

3 comments:

Bill Russell said...

At Erickson communities, we built leveraged our IT investment in GE Centricity and Health MEDX Vision to have a highly specified process for capturing documents including versioning and a rescind process, attributes of decision makers, and specific wishes resulting in Orders. All was viewable in a portal. For a practice of 25000 seniors, average age 83 and 90 percent independent living, we achieved extraordinary compliance and satisfaction. Let's leverage the standards for care plan being developed at S and I, the pilots underway with the Challenge Grants, and the datasets being developed in IMPACT to ensure that the appropriate structure and vocabularies for Advance Care Documents, Advance Care Wishes and Orders, and Advance Care Decision Makers become standardized and part of Effective Use of Health IT in the future. Great stuff

Jennifer Brokaw said...

Ideally, whatever platform is built isn't in its own hospital silo. We are a stand-alone medical practice in SF doing Advance Care Planning with families. We are looking for a way to integrate our product into EHRs. No obvious solutions yet! We are confident that our clients and their families are on board with the Advance Care Plan, but whether they will be honored "in the moment" remains to be seen. First step is making them accessible in multiple EHRs.

Susan E. Campbell, Care Plan RN said...

Having End of Life Preferences instantly available in locations that otherwise have to excercise the mandate to do everything to save every life will relieve doctors from needing to substitute their individual moral values and personal biases when the patient can't speak for him/herself - potentially even offering the option of watchful waiting in the emergency setting. Another advance that is sorely needed as a close companion to End of Life Preferences and Advance Care Planning is an electronic method to update release of information about all of or aspects of a patient's health information and billing to those they want to grant access to. Just like the Blue Button initiative which seeks to give patients their "up to the minute" medical data like the medication list, patients should be able to give and alter designations of who should have access to what information easily and all at once so that all providers in all his/her venues of care are recipients of the information. Advance directives might need to be altered to include the financial information default settings of who else should have access if I can't speak for myself. With shifting of risk to the consumer, this is more important than ever, especially to spouse and dependents who may need to step in on care decisions and pay bills. Relieving providers and other staff from the burden of having to suppress information exchange due to "HIPAA uncertainty" of who can get it should go a long way to helping medical care and patients lives retreat from constant regulatory strictions and associated PAPERwork and be about their health concerns and preferences again, seamlessly available to their personal caregivers as it used to be - with the safeguards against truly unauthorized release that HIPAA confers. All this information should feed into Care Plan being developed at ONC's S and I and HL7 and be available for Care Management Professionals and others who are designated by patients as part of their Care Team.