Support for Advance Health Care Directive Registry
December 15, 2017
Ms. Debbie Condrey, Chief Information Officer
Virginia Department of Health
109 Governor Street
Richmond, Virginia 23219
RE: Public Comment for Periodic Review of 12 VAC 5-67
Dear Ms. Condrey:
Thank you for the opportunity to comment on the Virginia Board of Health periodic review and small business impact review of 12 VAC 5-67, Advance Health Care Directive Registry. As discussed in greater detail below, the Virginia Hospital & Healthcare Association (VHHA) submits that this regulation should be retained.
Advance care planning is important to patients and their health care providers because it builds trust and teamwork among the patient, his/her health care providers and the patient’s agent and it helps avoid future confusion and conflict regarding the patient’s wishes when the patient can no longer make his/her own decisions. VHHA’s members constantly work with their patients and the public to explain advance care planning and assist with creating advance care directives. While providers and other community members are working to ensure everyone has an advance care directive, there is still work to be done in making sure health care providers and patients’ agents have access to a patient’s advance care directive when necessary.
Virginia’s Advance Health Care Directive Registry (Registry) is one way Virginians can ensure their advance care directives are available to those who need them. The Registry provides Virginians a place to store their advance care directives so that anyone with access to the registry will be able to honor their wishes. Patients must designate who can view their advance care directive by providing those individuals with a registration number and source. Healthcare providers that do not have this information cannot access a patient’s advance care directive. However, the regulations do allow a licensed health care provider to have access to the Registry for “patients who are comatose, incapacitated, or otherwise mentally or physically incapable of communication.” 12 VAC 5-67-30. In these cases, the provider must call a 1-800 number to gain access to the advance care directive which can be time-consuming and burdensome.
Virginia needs a robust registry with easy access for providers in order to continue the progress our members and others have made regarding advance care planning. Currently health care providers do not have electronic access to the Registry which severely limits their use of the Registry. With the advent of electronic health records (EHR) computers are available in most patient care areas. Electronic access to a patient’s advance care directive and a mechanism to add or link the advance care directive to the patient’s EHR would guarantee provider use of the Registry and ensure patient’s wishes are honored. The lack of easy access to the contents of the Registry will continue to be an impediment to its use. The Virginia Board of Health should explore ways to increase access to and use of the Registry.
VHHA appreciates the work the Board has done to establish an electronic registry for advance care directives and supports the retention of the Advance Health Care Directive Registry regulations at 12 VAC 5-67.
Thank you again for this opportunity to comment.
R. Brent Rawlings
Vice President & General Counsel
Advanced Medical Directive Central Registry
Thank you for the opportunity to comment on this review and the VDDH Central Registry for Advanced Medical Directives.
I regularly prepare AMD/Health POA for my clients as part of their estate plan and in other parts of my Elder Law practice. As a standard part of the process, once their documents are executed, I provide specific written instructions on how to upload their AMD to the Central Registry. I also provide this information regularly at workshops and other public speaking events.
I find very few Virginian's are aware that this program exists and they are very grateful for the information. I allow them to see my own I.D. card that identifies that I have my own AMD/HPOA on file and I demonstrate to them that I keep it with my insurance card, medication list and all in my wallet with my driver's license as ALL of these are likely to be the first places first responders or E.R. personnel are likely to find it.
The Central Registry provides an important function - especially in places like Charlottesville, where we have two maiin hospitals and to have an AMD/HPOA on file with just one is problematic one is transported to the OTHER of the hospitals in town.
Keep up the good work and I would only suggest that a more robust educational/public information program be underetaken to spread the word that this services is free, secure and easy and makes it more likely that a patient's healthcare wishes will be honored.
Thank you and regards
Doris W. Gelbman, Esq.
Advance Health Care Directive Registry [12 VAC 5 ? 67]
Hello. I just want to say that being a person with long-time mental & physical health issues and have filled out many advanced healthcare directories in Maine, California, and Virginia over the last three decades.. I would absolutely support a nationwide electronic advanced healthcare directory system.
When I’ve filled out healthcare directories before, and I have a new one at home waiting to be filled out but haven’t for the last six months because I feel it is a futile effort. Why do I feel it is futile? Because I was in the ICU once a few years back and NO ONE who had access to my advanced healthcare directive, namely my parents in Maine, didn’t think to say “hey wait a minute my daughter has an advanced healthcare directory, do you want to see it?” She totally ignored and/or forgot about my directory. No one saw my directory while I was in a coma for five days in the ICU. NO ONE!
Three times now in the last decade I have filled out advanced healthcare directories as I am being rolled into the operating room for a surgery. The people at admissions didn’t seem to know about them, then when they found out about the hospital’s directories they were a little annoyed that I wanted one and they had to find one for me, and I was actually still filling it out as the anesthesiologist was putting me under. I was kind of annoyed at all that and it just makes me think that it is a waste of time to fill them out. But I have strong feelings of what I want to happen with me and my body when I am on my way out of this lifetime. So how else can I take care of this? No way actually.. Hiring an attorney would be that same as putting my parents and/or friend and/or relative in charge. No use essentially.
Even if the persons listed on the advanced healthcare directory is efficient enough to have my (and everyone else’s healthcare directive in their glovebox or on their person they are responsible for) and they are assertive enough to present it at the time needed, they may not be available at that time. There has to be one directory for everyone’s wishes throughout the country. Otherwise there is no point of filling them out in the first place. However, for now, I would be happy with one database including the entire Commonwealth of Virginia that is available to ALL facilities in the Commonwealth - police, fire, EMT, hospitals of all kinds, everyone. ASAP..
Please support this effort and I feel it is desperately needed.
Support for retaining regulation [12 VAC 5-67], Advance Health Care Directive Registry,
It is the position of the Funeral Consumers Alliance of the Virginia Blue Ridge that regulation
[12 VAC 5-67], Advance Health Care Directive Registry, should be retained.
The Funeral Consumers Alliance, of which I am a member, works to educate and encourage people to have Advance Health Care documents in place and to seriously consider what treatments and interventions are acceptable to them. Communication between family members after these decisions have been made is often not easy or clear. The existence of the Registry itself adds legitimacy to a person’s decision process and thus provides support to family members to accept those decisions.
Citizens have submitted documents to this registry in order to assure these documents can be obtained in some future serious medical circumstance. Citizens should have assurance that the promised availability exists. Situations in which a health care power of attorney or advance directive may be required are always serious and often urgent. When someone has made intentional decisions on end of life care, these documents provide guidance to others, both family and medical personnel. The Registry retrieval of these documents, in a timely and clearly identified manner, facilitates optimal care.
The very existence of the Advance Health Care Directive Registry serves to emphasize the importance of these end of life documents. Studies show that the presence of Advance directives yields lower medical costs. In the case of extreme medical situations when a patient is comatose or otherwise incapacitated, access to this registry can have tremendous impact by avoidance of costly medical treatments that might otherwise be initiated.
Routine hospital admission procedures include asking a patient if these documents are in place. The fact that this question is asked when a patient is being re-admitted indicates that even in the medical system, retrieval is not always easy. The Advance Health Care Directive Registry provides a clearly identified resource for access to these documents.
Retaining the Advance Health Care Registry serves to support the individual citizen, medical personnel and institutions, and social and economic concerns.
Easy to Use
I have personally found that the Viriginia Advance Directive Registry is easy to use. Even though many of many clients at Chesapeake Behavioral Healthcare do not have access to a computer, they did find that the registry is a good idea.
Medical Society of Virginia Comments for Periodic Review of 12 VAC 5-67
January 3, 2018
RE: Public Comment for Periodic Review of 12 VAC 5-67
Dear Ms. Condrey:
The Medical Society of Virginia (MSV) appreciates the opportunity to comment on 12 VAC 5-67, Advance Health Care Directive Registry as part of the periodic review. As the registry provides immense benefit to Virginia patients, family members, and health care providers, MSV supports retaining these regulations.
The Advance Health Care Directive Registry alerts health care providers and family members to the existence of a patient’s advance care directive. This gives critical information that guides the provision of care in accordance with the patient’s wishes. The registry also gives family members and health care providers access to a patient’s end of life decisions during a medical emergency, even when the patient is unable to communicate the existence or placement of such decisions. Knowing a patient has an advance care directive is futile if the location or contents of the advance directive are unknown during a medical emergency, when quick decisions are critical. Making advance care directives available statewide improves the health care provider and family members’ ability to follow the patient’s health care wishes, even without the physical presence of the legal document.
For these reasons, MSV continues to support the Advance Health Care Directive Registry and respectfully submits an opportunity to improve health care provider awareness and utilization of the registry. Given that advance directives offer end of life planning decisions that are often pertinent during a medical emergency, quick provider access to the information is critical. Currently, only providers that have received an access code from their patient may access the patient’s advance directive online. Without the code, providers must call a 1-800 phone number to retrieve the patient’s information. Patients experiencing an unexpected medical emergency are not likely to be seen by their usual provider, meaning the emergency physician wouldn’t have the access code granting them online access to the registry and would instead have to call the 1-800 phone number. As patients often require immediate medical attention, physicians may not have time to make this phone call during an emergency. In these cases, many advance directives stored in the registry likely remain underutilized during critical initial medical treatment decisions. To improve utilization during emergencies, the online version of the registry should be accessible to all providers. Additionally, including a registry status in patient EHRs would further increase health care provider awareness of a patient’s advance directive stored in the registry.
MSV is thankful for this opportunity to comment and continues to support the Virginia Department of Health in its efforts to improve patient end of life care decisions. Please contact Lauren Bates-Rowe with any questions.
Assistant Vice President of Health Policy
Support for Va AD Registry- please continue and improve this resource
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
Heather Zelle, JD, PhD
Assistant Professor of Research
Department of Public Health Sciences
Institute of Law, Psychiatry, and Public Policy
UVa School of Medicine
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