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Advance Health Care Directive Registry [12 VAC 5 ‑ 67]
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1/3/18  6:38 pm
Commenter: Cynthia Elledge, DBHDS & UVa Institute of Law, Psychiatry and Public Policy

Support for Va AD Registry- please continue and improve this resource
 

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The Virginia Department of Behavioral Health and Developmental Services (DBHDS) and University of Virginia Institute of Law, Psychiatry and Public Policy (ILPPP)are grateful for the opportunity to comment on 12 VAC 5-67, Advance Health Care Directive Registry as part of the periodic review.  In our experience, the Virginia Advance Directive Registry is a much needed resource that deserves continued and increased funding to improve its functionality. 

 

After the amendment to the Health Care Decisions Act in 2009/2010 allowing Virginians to include mental health instructions in their AD, DBHDS and ILPPP developed an educational program aimed at increasing advance care planning awareness and utilization across the Commonwealth, especially mental health advance care planning.   Our program provides educational workshops for citizens, mental health professionals, health care providers, hospitals, and community first responders.  In addition, we are one of the Virginia Department of Health-approved programs to train Advance Directive Facilitators.  We have trained over 180 AD Facilitators throughout Virginia.  Our facilitators are helping citizens understand, value and embrace advance care planning. 

 

Given this project’s focus on improving mental health advance care planning, the majority of those we have trained as AD Facilitators are licensed mental health care providers and Peer Recovery Specialists at Virginia’s Community Services Boards and peer-run agencies.  Many of our trained facilitators work with individuals who do not have a wide network of social support.  This centralized database has provided a great deal of comfort to citizens who worry that during a crisis, they may forget that they have an AD or their agent may not be reachable immediately and thus the AD wouldn’t be informing crisis care.  Their hope is that the attending physician would search the Registry and discover the individual’s AD. 

 

Unfortunately, the lived reality has not matched expectations. In most mental or medical emergency situations, the physician caring for someone in crisis is not the physician to whom the individual provided their Registry log-in information; thus the physician cannot easily or efficiently access the database. Instead, the physician must call the 1-800 number. This process is often too time consuming for the emergency care providers and often is omitted in the interest of providing immediate crisis care for the patient.  We have also learned that many physicians do not know that the Va AD Registry exists, and thus do not know to consult it when a patient does not have capacity.  Clearly, a great deal of physician education and community education is needed to raise awareness about this Registry and the important role it can play in patients getting the care they want and avoiding the care they do not want—whether it’s a mental health emergency, medical emergency, or end of life situation.

 

Beyond educating physicians and other health care providers about the Registry itself, accessibility to the Registry should be less cumbersome.  Ideally, there should be interoperability between the various health systems’ electronic medical records (EMRs) and the Registry, and all EMRs should include a Registry status notification for each patient.  We recognize that this level of interoperability may be several years in the future.  In the meantime, we recommend that the online database be available to all providers rather than requiring multiple phone calls to locate an AD. 

 

When providers cannot access ADs during a crisis, patients do not always get the care they prefer and/or may be given treatments they actually refused. For patients who survive such a crisis, many come away from that experience no longer believing in the value or purpose of an AD: “After all that work to write one and upload it to the Registry, it didn’t have any impact on my care during my recent experience.”   This sentiment spreads quickly as people tell friends and family about how their AD was not consulted during a mental health or medical emergency.  This in turn negatively impacts citizens’ trust and interest in completing an AD, ultimately undermining our national effort to increase utilization of advance care planning.

 

The AD Registry was designed to help people.  The Registry has the potential to help people get the care they want via improving communication efficiencies during medical and mental health emergencies.  Currently, there are multiple barriers to achieving its full potential.  We recommend continued and increased funding to address interoperability between EMRs and the Registry as well as full accessibility for all providers via the online database.  To improve the functionality of the database on the provider side, please consult with physicians and other providers to learn what they would find most helpful and efficient.

 

Thank you for this opportunity to comment. We fully support and commend the Virginia Department of Health for its creation and maintenance of the AD Registry.  Our suggestions aim to help further improve achievement of the Registry’s goal of improving care during mental health and medical emergencies as well as end of life care.

 

Please contact Cynthia Elledge, PhD, with any questions.

 

Cynthia Elledge, PhD

Advance Directive Implementation Coordinator

DBHDS and UVa Institute of Law, Psychiatry and Public Policy

Cynthia@virginia.edu

(434) 297-7879

 

Heather Zelle, JD, PhD

Assistant Professor of Research

Department of Public Health Sciences

Clinical Psychologist

Institute of Law, Psychiatry, and Public Policy

UVa School of Medicine

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