“Unfortunately, I don’t know a lot about my living will. In fact, I’m not even sure where it is at this point.”
The Academy’s Steve Hartnett recently pointed out in a blog post that Healthcare Documents May Be the Most Important Thing We Do. But how effective are these documents on their own? Clearly not very, if Tom Brokaw is any example.
In a 2012 TED talk between Brokaw and his daughter, Dr. Jennifer Brokaw, it is quickly made clear that Mr. Brokaw’s wishes aren’t exactly as in order as he had thought. “You know I have a living will, and your mother does as well,” he begins. But his daughter replies that she knows nothing about his living will. The audience responds with laughter and applause while Mr. Brokaw chuckles and looks a bit abashed. And in response, he comes clean and admits: “Unfortunately, I don’t know a lot about my living will. In fact, I’m not even sure where it is…”
This brief exchange reveals volumes: an advance directive was created, but was not shared with close relatives and is certainly not available in an emergency. As Dr. Jennifer Brokaw observes, just creating an advance directive is frequently not enough; an actual conversation with loved ones goes a long way toward making sure clients actually get their desired results.
More evidence: New York Times’ Paula Span recently reported on numerous cases of advance directives being forgotten or misplaced, and thus not available at the hospital. Or the family was unaware that a directive even existed while the document was overlooked in the chart by medical personnel. But it doesn’t have to be this way.
The solution is twofold. Clients need:
- Instant, electronic access to their advance directives. Of course Mr. Brokaw and everyone else should share copies of their advance directive with loved ones and physicians. But as Span points out – this isn’t enough. Many people don’t have the capacity for thinking about a legal document when they’re rushing to their loved one’s side in a medical emergency. Or they may be alone in a crisis. The answer: store advance directives electronically. This could be in an online registry or mobile app. These services, which are operated by both private and not-for-profit organizations, offer a variety of options with different levels of service and features. A handful of states also operate their own registries. Many also include valuable emergency contact and medical emergency information. With electronic access, people don’t have to worry about where they may have put their documents – they will always be accessible to hospital staff from a website or via fax or email simply by carrying their registry’s wallet card.
- Talk with loved ones about their goals for care and for living with illness. The Conversation Project is a good resource to help clients with this. Some registries also assist and prompt clients to have this discussion with family members.
The takeaway from Tom Brokaw: don’t just draft your clients’ advance directives. Make the documents work for your clients as intended. Consider registering clients’ directives and also giving them the tools they need to talk with loved ones about their wishes.
Feel free to contact me for more information about conversational aids and registry options.
Randi J. Siegel, MBA, is the President of DocuBank (docubank.com), which ensures that the emergency information and healthcare directives of its 200,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives. She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly. Randi is an ongoing contributor to the Academy blog.
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