(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 38, Issue 5.) Scroll to the bottom to view letters to the editor.
Like other advance directives, the videos can be often stored in state-sanctioned registries
Online videos have transformed the way we live. Now, as a growing number of vendors offer internet-based methods for making video advance directives, they may start to influence how we die.
At least two states have embraced videos as a way to record—and share—your end-of-life wishes.
Abandoning the traditional paperwork and legalese, video advance directives are created using one of several downloadable smartphone apps: a person registers, logs on and turns on the video recorder and follows the instructions. The app asks you to answer a series of questions about your health care intentions. Once the video advance directive is "signed" it is securely stored in the cloud.
This is not something anyone can watch on YouTube. Your message remains private until you can no longer speak for yourself. Once recorded and stored, anyone you have authorized-- your health care provider, loved ones, or anyone else—is provided a login-in to access and replay your wishes for life-sustaining medical care.
But will it hold in court? Or in the hospital?
So far, only Maryland law specifically allows an advance directive to be delivered exclusively via video; New Jersey
What is still unknown is whether a critical mass of the public is willing to trust the cloud-based registries to store their advance directives.
laws allows a video or audio tape recording to supplement a written advance directive.
While those laws haven’t been challenged in court, advocates of the new technology point out that courts have been very receptive of a variety of forms of advance directives, so they are likely to accept a video as well.
As for acceptance by hospital staff, one study shows health care workers will welcome the clear, unambiguous articulation of their patients’ wishes—in his or her own words.
Noting that "interpretation errors are common with living wills and POLST forms," Dr. Fred Mirarchi, surveyed 700 physicians at 13 hospitals, asking them to interpret patients’ wishes based upon paper forms versus video expressions. The doctors preferred the clarity of the video messages, said Mirarchi who is medical director of University of Pittsburgh Medical Center Hamot in Erie, PA.1 surveyed 700 physicians at 13 hospitals, asking them to interpret patients’ wishes based upon paper forms versus video expressions. The doctors preferred the clarity of the video messages, said Mirarchi who is medical director of University of Pittsburgh Medical Center Hamot in Erie, PA.1
"Our study shows that medical professionals are more likely to reach a consensus after viewing a video testimonial, proving that we can do better than paper forms alone." he said.
The Maryland state health department encourages its citizens to create electronic advance directives and is promoting the idea through educational and other public awareness initiatives at senior centers, nursing homes, religious and academic institutions.
Once created, advance directives need to be accessible by health care providers and others. To make that easier, thirteen states have established registries of advance directives. There are also several private companies offering advance directive storage services, some for a fee. The list is below.
Rather than set up its own advance directives registry,
Maryland steers its citizens to mydirectives.com, which boasts that it is the first web—and mobile—based HIPAA-compliant advanced directives tool.
The mydirectives app for iPhones allows anyone registered with the service to create a video advance directive and access it from the cloud anywhere in the world. (It is currently only available on iPhones; an Android app is in development.) "That video message," says co-founder and CEO Jeff Zucker, "is a pretty cool way to…see the person is in their right mind, not saying it in a moment of stress or panic."
Individuals can also upload and store other critical health related information, including living wills, POLST forms and even wills, electronic or on paper.
All of this is as portable as the internet. So if you live in Florida and have a health emergency in Seattle, a web-based registry will give health providers to instant access your orders. What is still unknown is whether a critical mass of the public is willing to trust the cloud-based registries to store their advance directives.
Zucker says My Directives sells access to its database to hospital and health insurance providers who can access patients’ records stored in their database—with appropriate patient approval. The service is free to consumers.
Endnotes
1. Mirarchi, Ferdinando L.; Cooney, Timothy E.; Venkat, Arvind; More, TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care. Journal of Patient Safety. 13(2):51-61, June 2017.
Richard Sandza is a summer intern at the ABA Commission of Law and Aging.
National Advance Directive Registries
The following list of National Advance Directive Registries was compiled by ABA Commission on Law and Aging. The summary provides thumbnail descriptions of state advance directive registries, as of June, 2017, based solely on a review of state law and state registry web pages. Additional research is needed on the operational success of these registries. This review does NOT include registries exclusively for Physician Orders for Life-Sustaining Treatment (POLST) or its variations.
Private registries have also existed for at least two decades, but little is known about their operational outcomes, since such information is largely proprietary.
Private registries:
- America Living Will Registry (www.alwr.com)
- DocuBank (http://www.docubank.com)
- U.S. Living Will Registry (www.uslwr.com)
- MedicAlert Foundation (https://www.medicalert.org/ join/advance-directives.htm?selected=MedicAlert+M embership_Advance+Directive)
Companies offering video recording and registry services:
- In my own words (http://inmyownwords.com/)
- Institute on Health care Directives (https://institutehcd.com/)
- Life Message Media (www.lifemessagesmedia.com)
- My Directives. (www.MyDirectives.com)
- Vimty.com (www.vimty.com)
States with legislatively authorized health care advance directive registries:
The entire list with more information about each state program is available here:
https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html
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Letters To The Editor
Dear Editor,
While I appreciate the seemingly exhaustive list of advance directive registries at the end of the article, I was sorry the author did not address a major problem with using such registries.
Though I have practiced estate planning in California since before our registry was created, I have never advised clients to use it (I usually tell them about it). My concern is that if a person registered an advance directive, unless it were needed a very short time later, the person could easily have revoked that directive and created a new one (but failed to register it). I'm curious what other elder law attorneys (and the author) think about this issue.
Sincerely,
Sarah Shena
Attorney/Mediator