FAQ by Hospitals and Health Care Providers

These are questions frequently asked by Health Care Providers, for more general FAQ, click here.

Questions Frequently Asked By Health Care Providers:

1.      How did the Registry come about?

Over the course of his professional career, Dr. Barmakian noticed how many times family members agonized over end-of-life decisions for their loved ones.  In many instances, an advance directive had been prepared, but it could not be found or was not available when it was needed.  Unable to make a decision, most families told the doctor to “do everything you can.”  This course of action usually resulted in a prolonged, often painful, death for their loved one.  Because laws regarding advance directives vary from state to state, there is no single agency or organization responsible for maintaining a centralized registry.  Frustrated by these circumstances, Dr. Barmakian started the U.S. Living Will Registry® in 1996.  After extensive legal background work and in consultation with attorneys who represent hospitals, the Registry was developed and thoroughly tested before actually beginning operations.

During the past fifteen years, feedback has been obtained from hospital attorneys, community attorneys, patient representatives, social workers, chaplains, admissions officers, medical records directors, nurses, doctors, organ transplant organizations, registrants, family members of registrants, nursing home directors, hospice directors, directors of home health organizations, visiting nurses, and hospital administrators as well as people interested in improving end-of-life care in America.  Based upon this feedback, improvements in the Registry and in the registration process have been implemented, including full Internet service and the Living Vault® service (see below).   In so doing, the Registry is now optimally situated to fulfill its mission of making people’s health care choices available whenever and wherever they are needed.

2.      How does the Registry help health care providers comply with federal regulations regarding advance directives?

Health care providers (hospitals, doctors, skilled nursing facilities, nursing facilities, home health agencies, providers of home health care, and hospices) are required by federal law to inquire as to whether any patient has an advance directive and, if so, to obtain a copy of the document and place it in the medical record. Providers are also required to supply information to patients and to the community about advance directives. The law specifically allows health care providers to use outside agents to help comply with these regulations.  Health care providers have had a difficult time managing advance directives at their institutions.  Filing, storing, retrieving, updating and trying to determine if an old document is still valid, are among the problems confronting providers.  U.S. Living Will Registry solves all of these problems.  The Registry provides a way for providers to obtain up to date advance directives 24 hours a day through its automated service. In addition, the Registry provides educational material about advance directives and helps providers satisfy the community education requirement of the federal law. The Registry also eliminates the need for health care providers to maintain their own storage systems for advance directives, and because the Registry contacts each registrant annually to confirm that their choices have not changed, hospitals can be assured that the document they receive is up to date. The Registry also provides emergency contact information and in most instances, organ donor information, both of which can be very helpful to hospital personnel. The Registry will log all access to documents and will provide reports to satisfy your compliance requirements.

3.      What do lawyers think about the Registry?

Lawyers who review the Policies & Procedures and the Registration Agreement are always very enthusiastic about the service. The Registry answers the question most frequently asked attorneys about advance directives: "Where should I keep my advance directive?" Lawyers view this service as complementary to the service they provide in helping people prepare their directives; they consider it a value-added service they can offer to their clients.  You can read comments from attorneys who use the Registry by going to the "Testimonials" page.

4.  What about people who speak only Spanish?

The Registry has prepared Spanish translations of the information packet and the Registration Agreement.  Those who register with the Spanish Registration Agreement, automatically receive Spanish versions of the confirmation letter and annual update letters.  Visit Español to view the Spanish version of the educational pamphlet and to download a pdf version of this translation.

5.  What is the Living Vault®, and how does it work?

The Living Vault® service allows member Health Care Providers to store and retrieve advance directives not accompanied by a Registration Agreement.  The Registration Agreement is an agreement between the U.S. Living Will Registry and the registrant, that authorizes the Registry to send a copy of their advance directive to ANY health care provider.  Documents without a Registration Agreement submitted to the Registry by Providers are stored in that Provider's Living Vault®.  These documents are stored so that they are only accessible by the originating Provider.  Thus, the Living Vault® is like an extension of the Provider's medical record department.  Members of the same health system are considered the same Provider, making it easy for different facilities within the same system to share advance directives.  The Living Vault® also allows Providers to manage ALL of their advance directives through the Registry.  They can register the backlog of advance directives they already have stored in their records department, and can also submit documents they receive from the admitting department, regardless of whether or not the patient signs the Registration Agreement.  The Living Vault® service allows Providers to utilize the Registry as a comprehensive and economical way to manage ALL of their advance directives.  There is a U.S. Patent protecting  the Living Vault® methodology.

6.  What happens when a health care provider other than the originating provider tries to access a document from a Living Vault®?

The answer to this question depends on state law.  In general, a provider other than the originating provider seeking a document from a Living Vault® is shown a message indicating that the document exists, but is not accessible, and giving the inquiring provider the location of the document so that they can contact that provider directly to obtain a copy.  Some states make it a crime to withhold an advance directive.  In these states, documents stored in a provider's Living Vault® are released to other providers.  The system is sophisticated and flexible enough to allow access to be restricted by state or by particular facilities within a health system.

7.  Is there a special way to access documents in a Living Vault®?

No.  Providers access all documents in the same way.  They simply input the name and birth date or social security number of the patient about whom they are inquiring.  The Registry's computer determines whether or not a particular provider has access to a particular document, and responds accordingly.  

8.  How reliable is the Registry?

The Registry's systems reside in a state of the art, secure, climate controlled data center, complete with multiple internet sources, multiple power sources and back-up generator power as well as constant monitoring.  Daily on-site and off-site data backups are performed.  The data center offers "five 9s" (99.999%) reliability, and in the rare case of an outage, documents can be accessed via telephone/fax by calling the Registry.

9.  How do medical personnel know when to access the Registry?

Each registrant is given labels to place on their insurance card and driver's license stating that they are registered, and a wallet card listing their Registration number.   However, medical personnel do not need to see these labels or card in order to utilize the Registry. Health care providers can search the Registry's database using the patient's name and birth date or social security number. Because the Registry provides emergency contact information as well as advance directives, hospitals can use the Registry in order to reach the family members of unconscious or incoherent patients who are unable to communicate when admitted.

10.  What safeguards to registrants' privacy does the Registry have in place?

The Registry is very sensitive to the privacy of our registrants and to the confidentiality of the information and the documents they register with us. We are committed to maintaining this privacy and confidentiality.  The Registry utilizes 128 bit encryption when transmitting documents over the Internet, and access to the Registry's system is password protected.

Once the document is transmitted to the health care provider, it is immediately placed in the confidential medical record. Law protects the privacy of medical records. Our agreement with each registrant clearly states "Registry is not authorized to share my personal information with parties other than health care providers."  The Registry does not share or sell personal information to any outside parties.

11.  Is the Registry HIPAA compliant?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) mandated regulations that govern privacy, security, and administrative simplification standards for health care information.  The Registry is not a covered entity under the HIPAA regulations.  The Registry voluntarily complies with HIPAA regulations, and will enter into Business Associate/Chain of Trust Agreements with member Health Care Providers.  The Registration Agreement signed by each registrant of the U.S. Living Will Registry authorizes the Registry to provide a copy of the registrant’s advance directive to health care providers.  The Agreement also restricts the Registry from providing advance directives or personal information to parties other than health care providers.  Registry staff are required to sign a confidentiality agreement.  In addition, the Registry maintains a log of date, time, where and to whom each document is sent.  This information is available to member Health Care Providers through a custom report feature on the "Health Care Providers" web page.  These reports are a great way to document your facility's compliance with HIPAA, and to comply with state and federal regulations regarding advance directives.

12.  What is the Source Code?

The Source Code is an 8 digit number that identifies the member Health Care Provider or Community Partner through which that particular document is being registered.  All documents must have a Source Code to be accepted by the Registry for registration.  Custom confirmation and annual update letters are generated for each registrant based on the Source Code.  These letters specifically identify the member Health Care Provider or Community Partner that allowed the registrant to register free of charge.  This is an ongoing source of goodwill and marketing for your organization or business.  In addition, the Source Code allows the Registry to generate reports for each member Health Care Provider and Community Partner, detailing how many documents were registered through them.  Member Health Care Providers can also receive reports of specific access/retrieval information for their facility. 

13.  How does the Registry fit in with our hospital's electronic medical record system?

While most electronic medical records systems store the entire record, including the advance directive, there are problems with documents stored in this manner.  There is no way of knowing if the document on file is the most recent document, or if it has been revoked or changed.  If the document is old, there is no way of being sure that the document still reflects the patient's wishes.  Individual documents are not easily retrieved from the electronic record.  The U.S. Living Will Registry operates as a menu item application that works with any electronic medical record system.  By utilizing the Registry, hospital personnel can not only access documents stored from their own patients, they can also access the Registry's entire database of documents.

14.   Why is the annual update important?

By their very nature, advance directives are prepared well in advance of when they may be needed.  If a document has not been updated for several years, there could be legitimate doubts as to whether it still reflects the patient's wishes.  Hospital attorneys were concerned about the age of the advance directives they would receive from the Registry, and whether or not the documents were still valid. The Registry attempts to contact each registrant every year to confirm that their advance directive has not been changed or revoked.  The date of this latest update is recorded on the coversheet sent to the provider along with the advance directive. In this way, providers can be assured that the document they receive is current, up to date, and still reflects the patient's wishes.  Personal information and Emergency Contact Information are also updated at this time.

15. How are different health care providers utilizing the Registry?

With the Living Vault® service, Providers are now able to register ALL of their advance directives.  This allows the Registry to serve as a comprehensive system that provides an efficient and economical way to manage advance directives at a facility and across an entire health system.  With the Living Vault®, documents can easily be shared among all of the different institutions within a health care system.  So hospitals, nursing facilities, hospices, ambulatory care centers, home health agencies and medical offices can all access each others Living Vault® documents.

16.  What does our facility have to do to start using the Registry?

Any health care provider can access the Registry to request an advance directive by calling 1-800-LIV-WILL.  Your facility can do that now.  However, only member providers can use the automated service.  Non-member providers must leave a voice message with information about their facility and the patient about whom they are requesting information.  Once the information is confirmed by the Registry, the document is manually transmitted.  Member providers can access the via secure Internet to request advance directives and can obtain documents and emergency contact information in a matter of seconds.  Also, only member Providers can submit documents to the Registry for storage.  To become a member provider, click here.

17.  Can hospital personnel access the Registry easily?

Yes.  Our technical staff will set up your facility so that personnel who are authenticated onto your hospital computer system, will automatically be authenticated to access the Registry.  A privilege level system is available to assign different privilege levels to different personnel.  The system can also accommodate access by ancillary facilities and doctor's offices.

18.  Can we transfer the advance directives we now have on file to the Registry?

Yes.  With the Living Vault® service, member Health Care Providers can register documents WITHOUT a signed Registration Agreement.  This means that you can register all of the documents you currently have filed in your record room, as well as all new documents you receive, including those from patients who choose not to sign the Registration Agreement.  With the Living Vault®, you can manage ALL of your advance directives efficiently and economically.

19.  Can providers send a copy of the Registration Agreement to the Registry along with a copy of the advance directive?

Yes, copies of advance directives and Registration Agreements are acceptable.  

20.  How do we send documents to the Registry?

Hospital staff can upload documents to the Registry by scanning the document and entering basic identifying information.

You can also send the documents to the Registry for uploading.  There are 3 ways you can send documents to the Registry for registration:  1) mail--you can send us bulk mailings at the end of the day or week, 2) fax--each person's document can be faxed to the Registry...this is a great way for the admissions department or the medical records department to send documents as patients are admitted or as their medical records are filed upon discharge, 3) as an electronic submission...either as an attachment to an e-mail (the Registry will set up a secure e-mail account so that you will maintain privacy during document transmission), or by CD or tape.  Electronic submissions must be in pdf format with each person's document as a separate file.  This is a good way to send us documents you have in storage in your medical records department.

21.  What does the Joint Commission on Accreditation of Health care Organizations say about using the Registry's system to manage advance directives?

We asked the JCAHO to comment on the use of the Registry's system as part of a hospital's overall advance directive policy.  The response from the JCAHO's attorney can be viewed by clicking here:  JCAHO.

22.  Once we decide to become a member of the Registry, what should we do?

Obtain a Membership Agreement from the Registry by calling, faxing, e-mailing or writing to us.  Complete the Membership Agreement and return it with your payment. We will provide you with an invoice, our tax ID # and any other information you may need.  We will activate your ID number and Access Codes immediately.  Our technical staff will communicate with yours to set up the appropriate security measures to allow for access by your employees.

Should you think of any other questions, please e-mail us at admin@uslivingwillregistry.com or call 908-654-1441.

 

 

 
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