Frequently Asked Questions (FAQ) About The U.S. Advance Care Plan Registry®
For even more information, you may also wish to visit Frequently Asked Questions by Health Care Providers.
What Is An Advance Directive?
An advance directive allows a person to make their health care choices known in advance of an incapacitating illness. It is a legal document in which you state how you want to be treated in the event you become very ill and there is no reasonable hope for your recovery. Although laws vary from state to state in America, there are basically two kinds of directives:
- A Living Will is a legal document in which you state the kind of health care you want or don’t want under certain circumstances.
- A Health Care Proxy (or durable health care power of attorney) is a legal document in which you name someone close to you to make decisions about your health care in the event you become incapacitated.
There are also other documents associated with a comprehensive Advance Care Plan. These may include a DNR (Do Not Resuscitate) order that tells healthcare personnel not to perform cardiopulmonary resuscitation, POLST (Physician’s Order for Life Sustaining Treatment) that include orders from your doctor about how to treat you–these are sometime called MOLST or MOST (Medical Orders for Life Sustaining Treatment).
Can A Person Have More Than One Type of Advance Care Plan Document?
Yes, you can have a Health Care Proxy – naming a person to make the decisions — and a Living Will to help guide that person in making the decisions. However, in order for your advance directive to be useful, it has to available and accessible. After all, it won’t do you any good unless it’s available when needed. You can register both, a living will and a health care proxy, with the U.S. Advance Care Plan Registry®. The Registry also stores all other types of advance care planning documents such as DNR, POLST, MOLST, MOST, organ donor instructions and all other documents relating to your advance care plan.
Why Do I Need An Advance Directive?
Advance directives give you a voice in decisions about your medical care when you are unconscious or too ill to communicate. As long as you are able to express your own decisions, your advance directive will not be used, and you can accept or refuse any medical treatment. But if you become seriously ill, you may lose the ability to participate in decisions about your own treatment. That’s when your advance directive becomes important. Having a conversation with your loved ones, and memorializing that conversation in a document, will ensure that your wishes are followed and takes the burden of making decisions off of your family.
When Would An Advance Directive Become Effective?
Your advance directive will become effective when you are incapacitated and are unable to make decisions regarding your care.
How Does The U.S. Advance Care Plan Registry® Work?
Simply register your advance directive with the U.S. Advance Care Plan Registry® by filling out a form that gives the Registry permission to send a copy to any health care provider. You agree to inform the Registry if you ever decide to change your advance directive. Once registered, you are registered for life.
The Registry electronically stores your advance directive in its computer database and identifies it by a unique Registration #. You are given labels for you driver’s license and insurance card, stating that you are registered, and a wallet card listing your Registration #. Health care providers can contact the Registry, and request a copy of your advance directive. The Registry sends a copy to the provider, and it is kept as part of your confidential medical record. If you don’t have your card, the health care provider can still access your document by searching for name and birth date.
Your document is stored and transmitted in the safest way possible to insure your privacy. You will have peace of mind knowing that your advance directive is safe, secure and available to your family and doctors whenever and wherever it is needed. And because health care providers can contact the Registry to see if any patient has an advance directive, they can retrieve your document even if they don’t have your card.
Do I have to submit my Social Security number?
No, the Registry does not use your social security number to register your documents. The Registry assigns a unique Registration # to each registrant. The Registration # is listed on your wallet card, and allows easy access to your document via the secure Internet site.
How do you ensure the privacy of my Social Security #?
Hospitals commonly use social security numbers to identify patients, and when the Registry started in 1996, we initially utilized social security numbers as well. The Registry no longer uses social security numbers to identify registrants.
How much does it cost to register?
Visit the How to Register page to get started. If you register directly with the Registry, the cost of a LIFETIME membership is $99.95. We offer many discounts, and most people who register qualify for one of the discounts.
What Are The Benefits To Me?
- Peace Of Mind – Namely, peace of mind, knowing that your choices are secure and will be available to your family and doctors even if you become incapacitated or ill away from home.
- Serenity – The serenity of knowing that you will be able to “speak” to your family and doctors through your advance directive about your personal philosophy and help them make the decisions you want without them feeling guilt or remorse.
- Security – The security of confidential, 24-hour access to your choices by authorized hospitals across America.
What If I Change My Mind?
You can revoke your health care power of attorney at any time while you are competent by informing your agent or physician that you have changed your mind. You must notify the Registry if you change or revoke your advance directive. You can update your personal information and emergency contact information yourself on your Personal Account online. You can also upload a new document to replace your current document if your wishes or condition change.
How Do I Prepare And Register An Advance Directive?
If you don’t have an advance directive, decide upon the kinds of medical treatment you wish to have (or not have) and discuss them with your chosen decision-maker and your family. Next, formalize your wishes in an advance directive:
- Ask your lawyer to help you.
- Or request assistance from your local hospital in finalizing your document.
Visit our How to Register page for complete instructions on how you can register online. You can also obtain a Living Will form from the U.S. Advance Care Plan Registry®, any hospital or via the Internet (search: living will). Register your advance directive by completing the Registration Agreement (you can obtain an Agreement from a member Health Care Provider or Community Partner), and mailing it with your advance directive to the U.S. Advance Care Plan Registry®.
Will My Advance Directive Be Honored If I Become Ill In Another State?
All 50 states and the District of Columbia have laws recognizing the use of advance directives (i.e., living wills, medical powers of attorney). Most states honor another state’s advance directive. But more importantly, if your advance directive is registered, your family and doctors will have access to your wishes.
Furthermore, both federal and state laws govern the use of advance directives. The federal law, the Patient Self-Determination Act, requires health care facilities that receive Medicaid and Medicare funds to inform patients of their rights to execute advance directives.
Is the U.S. Advance Care Plan Registry® a legally acceptable way to store and transmit advance directives?
The Registry was designed in consultation with attorneys who represent hospitals. We wanted to be sure that the documents we transmitted would be acceptable to health care providers, so we asked the hospital’s attorneys what they would require from such a service. We then included their suggestions in our Policies & Procedures.
In addition, an independent law firm reviewed the Registry’s Policies & Procedures and then reviewed the laws on advance directives in all 50 states. They concluded that there was no legal impediment to health care providers relying on documents they received from the Registry.
What if I want to register, but I don't want to send in my document?
While our systems are secure and your confidentiality is protected, we understand that some people simply don’t want to place their document on-line. The answer is the Document Locator Form. This form allows people to register, without submitting their actual document for on-line storage. Instead of scanning the document into the database, the registrant completes a Document Locator Form. This form states that the registrant has an up to date advance directive, and tells the provider where the document can be found. You can list the names and telephone numbers of people who you have given your document to, and you can also list specific locations where you have placed your document. The completed form is scanned into the database instead of the actual document, so when a health care provider accesses your document, they will receive the locator form. They will know that you have an advance directive and can get it when needed. For more information on the Document Locator Form, send an email to us requesting information on the form.
What safeguards are in place to protect my privacy?
Your advance directive is a legal document and its privacy and confidentiality must be protected. In the Registration Agreement, it is clearly stated “Registry is not authorized to share my personal information with parties other than health care providers.” Health care providers (as defined by federal regulations on advance directives) are hospitals, doctors, skilled nursing facilities, nursing facilities, home health agencies, providers of home health care, ambulatory surgery facilities, and hospices. Once transmitted to a provider, your advance directive becomes part of your medical record. Law protects the privacy of medical records. The Registry database is housed in a state of the art data center, and is protected by the latest security measures.
The Registry does not share or sell your personal information and no identifying information is collected from this web site. Please see the link to our Privacy Statement for more details.
What does the Registry do with the advance directive I send in to register?
Your advance directive is scanned into our computer so that an exact image of your document is stored. The Registry does not provide any legal advice or legal services. We simply check to make sure all of the spaces on your document are completed, and store your document to make it available to health care providers whenever and wherever it is needed. If you ever decide to change your advance directive, your old directive will be destroyed, and your new document will be registered in the Registry’s data base.
How do health care providers know that the advance directive they receive from the Registry is up to date?
The Registry contacts each registrant via email every year to have them confirm that their advance directive, personal information and emergency contact information have not changed. The date of the last update to each registrant’s information is printed on the coversheet that the provider receives when they request your advance directive. With this system, your confirmed document and information should always be less than one year old.
By their very nature, advance directives are prepared well in advance of when they may be needed. So even if your document is available, if it is very old, there could be some question as to whether it still reflects your wishes. The Registry sends a letter every year to each registrant that allows them to update their personal and emergency contact information, and to confirm that their advance directive has not been changed or revoked. The date of this confirmation is recorded on the wallet card and on the coversheet provided to health care providers when they access your document. In this way, there will be no doubt that your document still reflects your current wishes.
May I register a copy of my advance directive or do I need to supply one with original signatures?
You may file a copy of your document. In the Registration Agreement, you certify that if you are registering a copy of your advance directive, it is a true and correct copy of the original document. In this way we can be sure that the document we have on file is an exact copy of your advance directive, while allowing you to keep your original document.
Does the Registry offer services in 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.
What do registrants think about this service?
We receive calls from people every day asking what current registrants think of our service. The feedback we receive has only been positive. Please go to the “Testimonials” link to read what our registrants say about the service we provide.