Editor's Corner: Posting advance directives online -- are consumers ready for the virtual living will?
Volume 5, No. 2, Summer 2000
Carol A. Schwab, Editor
Does North Carolina need an online central registry for organ donations, living wills, and health care powers of attorney? For those of us who see the Internet as one of the primary methods for obtaining information, the concept of an online central registry for advance directives has a definite appeal. After all, an advance directive serves little purpose if no one knows you have it, or if no one can find it when it is needed. Many seniors want the security of knowing that their living will or health care power of attorney will be available when the time comes to use them.
The law requires most medical facilities to note in a patient's medical file whether he or she has an advance directive. But, what if you end up in an emergency room far from home and far from your doctor and medical file? Many elder law attorneys recommend carrying a wallet card indicating that you have an advance directive and who to call to obtain a copy in the event of an emergency. But, what if you get separated from your wallet? Obviously, neither method is foolproof. So, how do you ensure that your advance directives will be there when you need them?
In North Carolina, the Committee on a Central Registry for Living Wills and Organ Donations (under the auspices of a Legislative Research Commission), is considering an online central registry that would make advance directives available to the appropriate people 24 hours a day, 7 days a week. Although there are private online registration systems for advance directives, no other state currently sponsors an online central registry. While it sounds great in theory, many lawyers wonder if it will work in practice.
An informal survey of members of the Elder Law Section of the North Carolina Bar Association revealed less-than-enthusiastic support for an online central registry. Some members expressed serious reservations because of the potential problems with access, lag time, revocation, confidentiality, security, and the chilling effect it may have on people executing advance directives.
The Committee considered these concerns at hearings held in March and April of this year. As Chair of the Elder Law Section, I presented members' concerns to the Commission in a formal presentation at its first meeting and as an interested spectator at its second meeting. I encouraged the Committee to adopt a system that would be user friendly to avoid discouraging the execution of advance directives. I related how some Elder Law Council members have had success with giving their clients wallet cards to show that the client has an advance directive. Low tech has its advantages.
Representatives of medical providers took a more extreme position. They advocated a mandatory, online registration system that would contain reproductions of the documents. They argued in favor of making the central registry the exclusive method of having an advance directive in North Carolina. Essentially, they wanted one-stop shopping. If a medical provider checked the central registry for a patient's advance directive, and if it wasn't online, it didn't exist. While I understand their position, I was concerned that a mandatory, exclusive, online central registry would discourage many of the elderly from executing advance directives.
After considering these extreme positions, the Committee reached the following conclusions at its meeting in April:
- North Carolina will have an optional central registry for organ donation cards, living wills, and health care powers of attorney.
- Documents, in their entirety, will be accessible through the World Wide Web, 24 hours a day, 7 days a week, by the people designated to have access.
- There will be a user fee for registering documents, but there will not be a fee for accessing the documents.
- An individual, his attorney, or other representative, may send in the registration to the appropriate state agency with the fee.
- Registration, or lack thereof, will not affect the validity of a document. Registration will be optional.
- With a receipt for the user fee, the agency will send the registrant a wallet card containing pertinent information to minimize problems caused by the delay in entering information into the system .
- Access to the registry will be limited to maintain security and confidentiality.
- Nonresidents will be able to register with the registry.
- Health care providers will be given civil/criminal immunity for good faith, reasonable reliance upon information in the registry.
The following issues were left unresolved, pending further study. They will be discussed at the next Committee meeting after Labor Day.
- Which agency should have responsibility for maintaining and entering information into the registry?
- What are appropriate fees for entering information into the registry?
- What are appropriate time lines for entering information into the registry?
- How should access to the registry be limited in order to maintain confidentiality while allowing all concerned individuals access to part or all of the registry?
The accessibility issue posed the greatest obstacle for the Committee. How can the State give access to all health care providers and still maintain security and confidentiality? A password for each North Carolina health care provider would ignore the possibility that a North Carolina resident may be admitted to an out-of-state health care facility. Moreover, a password for each health care provider in North Carolina, much less the world, is not feasible. One password for the system that is provided to all health care providers would not remain confidential or secure for more than 30 seconds. Also, a system that limited access to health care providers would prevent the registrant, his attorney, his health care agent, and his family from accessing important documents that they may need.
After the meeting, I proposed an alternate plan to the Committee Counsel, who took my suggestion under advisement. I proposed that instead of limiting access to health care providers, limit access to the registrant and the people of his or her choice. The registrant would be responsible for providing his or her password to health care providers, family, health care agent, and attorney. The State would have to issue only one password per registration. Not only would this plan simplify the process, but it would save tax dollars. If only ten people register their documents, only ten passwords need be issued. Imagine the cost of issuing thousands of passwords to health care providers to access ten documents!
Which brings up another point. Will people want to register their advance directives online with a state agency? An element missing from the hearings was a consumer needs assessment. Some elder law attorneys have expressed grave doubts that their clients would want to register their advance directives online. So, will this be a valuable public service to consumers as the Committee believes? Or, will it be a black hole for tax dollars?
To help answer this question, I am posting an online questionnaire that lets people indicate whether they think an online central registry is needed. If you want to express your opinion, please click on the survey button. All opinions are welcome, even those from outside North Carolina. Only one response per person, please.
1. In North Carolina there are three advance directives recognized by statute: a living will, a health care power of attorney, and an advance instruction for mental health treatment. Return to text.
The opinions expressed in this editorial are the opinions of the author and do not necessarily represent the opinions of FFCI's Editorial Board, North Carolina Cooperative Extension Service, or North Carolina State University.
Carol A. Schwab is a Professor and Family Resource Management Specialist at NC State University. She is the former Chair of the Elder Law Section of the North Carolina Bar Association, and editor of FFCI.
Cite this article:
Schwab, Carol. Posting advance directives online -- are consumers ready for the virtual living will? The Forum for Family and Consumer Issues 5.2 (2000): 12 pars. July 2000.