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 few 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.

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 pending on 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 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 are of the highest quality available.  The main computer is custom built to telephone company reliability standards.  It is powered by conditioned electrical current through a true on-line uninterruptible power supply.  There is a battery back-up system designed to provide electrical power for 18 hours in case of a complete power outage, and an on-site propane or natural gas powered back-up electrical generator provides unlimited power for prolonged outages.  Internet access is via two distinct Internet Service Providers, so if one ISP is down, the other ISP will substitute.

The database is backed up internally with a RAID system, and off-site backup and storage via VPN is done daily, as well as daily tape back ups. 

In addition, the Registry has two access/retrieval systems:  the Fax System, accessible by telephone or Internet, where documents are transmitted over telephone lines to the provider's fax machine; and the Internet System, accessible via Internet, where encrypted documents are transmitted over the Internet to the provider's computer.  In the event of a widespread Internet mishap, the telephone/fax system will still work, and if there is a widespread breakdown in telephone service, the Internet system will function.  This versatility makes the U.S. Living Will Registry uniquely reliable. 

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 contact the Registry by telephone (1-800-LIV-WILL) or via the Internet to check to see if ANY patient has an advance directive. If the social security number of the patient in question is not available, Registry personnel can do a search by name to see if the patient has an advance directive registered. 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.  Can member Health Care Providers and Community Partners charge registrants a fee for this service?

The service is offered free of charge to registrants so that everyone can participate, and so that cost will never prevent anyone from registering this important document.  Everyone must register through a member Health Care Provider or Community Partner.  Member Health Care Providers are not permitted to charge a fee to register advance directives or organ donor information.  Community Partners may limit registration of documents to clients, customers, employees or members if they so choose, but they are not permitted to charge a fee to register advance directives or organ donor information.  Only those Partners enrolled in the Professional Registrar program are permitted to charge a registration assistance fee.

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.  How is the Registry funded?

We wanted the registry to be universally available to anyone who wanted to make sure their wishes were available wherever or whenever they were needed.  We did not want cost to be a factor when people chose to register their advance directives.  Many people on fixed or limited incomes are not able to afford even a small registration fee.  Therefore, registration of advance directives is free. Registration must be done through a member Health Care Provider or Community Partner.  Funding is obtained by charging fees to health care providers for access to the Registry's automated service.  This service gives providers an organized, efficient and low cost way to manage the storage and retrieval of documents at their facilities.  To provide the highest level of service to our registrants, non-member providers are able to access the Registry, but cannot use the automated service or submit documents to the Registry for registration.  See the "How it Works" for details. 

Free registration allows universal access to the Registry’s services to people of all income levels, and provides health care facilities with a valuable, low cost solution to their problem of managing advance directives.  For more information on membership, click here.

17.  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 automated service by telephone or 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.

18.  Can we access the advance directives in the Registry on the Internet? 

Yes.  We offer member Health Care Providers two ways to retrieve documents:  the Fax System and the Internet System.

n the Internet System, member providers access the Registry via Internet and receive documents by secure, encrypted transmission over the Internet directly to their computer.  The Internet is the most popular option in use today.  Hospitals and hospital systems can integrate the Registry into their systems, so that access to the Registry is just a click away.  Documents can be stored by social security # or a registration # that can be generated by the Registry or supplied by the hospital.  Authorized users can also search for a document by name and birth date.

In the Fax System, member providers can access advance directives, organ donor information and emergency contact information from the "Health Care Providers" link on our web site.  Health care providers can use the Registry’s secure web site to request an advance directive, but the document cannot be viewed, downloaded or accessed on the Internet.  When the Registry’s computer receives an Internet request for an advance directive, it transmits the document by telephone line directly to the requesting health care provider’s fax machine, thus bypassing the Internet completely.  This innovative system allows the health care provider the convenience and speed of requesting documents on the Internet, but gives the Registry complete control over the destination of the document.  Because the Registry’s computer transmits the document directly to the fax number assigned to the provider’s Identification Number and fax location, the destination of the document (the specific fax machine located in the health care facility) is known.  Documents and personal information cannot be viewed, downloaded or printed from a computer.  We started the Fax System in 1996 when the Internet was not commonly used by Providers.  With more widespread use of the Internet, we developed the Internet System.  At this time, the fax system is used as an emergency back up system as an alternate means of access if the Internet is unavailable.

19.  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.

20.  We are a large hospital, is it possible for us to register several different fax numbers with you so that each department can access documents to their own fax machines?

Yes.  The Registry can provide your facility with multiple fax locations.  The Identification Number in combination with the fax location tells the Registry’s computer to which specific fax machine the advance directive is to be sent.  While a hospice or nursing home may only require a single fax location to fulfill its needs, a medium size hospital may want the Emergency Room, Admitting Office, Medical Records Department, Intensive Care Unit and Patient Representative each to be able to receive documents on their own local fax machine. A large hospital may also want  each Nursing Unit to be able to retrieve documents. The Registry has flexible plans for every Provider's needs and budget.  You may also want to consider the Internet System, where access to the Registry is via the Internet, and documents are sent via encrypted transmission directly to your computer.  Click here for more information on membership.

21.  What should I do if my facility has a policy against accepting faxed advance directives?

After reviewing the laws of all states regarding advance directives, our attorney consultant found no legal impediment to health care facilities relying on advance directives they receive from the Registry by facsimile transmission. Therefore, you should check with your facility’s attorney to find out if there is a legal basis for this policy. 

22.  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.  

23.  How do we send documents to the Registry?

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 must be sent as a separate fax transmission...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 .tif 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.

24.  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.

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

First, decide whether you want to retrieve documents using the Fax System or the Internet System.  If you choose the Fax System, determine how many locations in your facility need to be able to receive documents from the Registry.  Contact us for more information on how to become a member.

Next, 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.  In the Membership Agreement, you will be providing us with the locations and fax numbers we need to set up your access to the Registry.  We will activate your ID number and Access Codes immediately and send test faxes to each fax machine.  With the Internet System, 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 toll-free 1-800-LIV-WILL (1-800-548-9455).