by Craig Klugman, Ph.D.
April 16 is National Healthcare Decisions Day (NHDD), a day dedicated to advance care planning—having conversations about end of life care and perhaps completing advance directives. According to the official website, “National Healthcare Decisions Day exists to inspire, educate and empower the public and providers about the importance of advance care planning.”
Nathan Kottkamp, a health law attorney in Richmond, Virginia and member of several hospital ethics committees founded this event as Virginia Advance Directives Day in 2006. Lawyers, nurses, health care associations, doctors, and community agencies supported that first day. Two years later, he took the model national with the first NHDD. Kottkamp wrote his own directive at 20 years-of-age. Through email, I asked him what inspired him to do so at such a young time in his life. He explained that his major at William & Mary was ethics and between his junior and senior year there, he interned at the New York Citizens’ Committee for Health Care Decisions. Those experiences combined with his interest in bioethics led him fill out his own forms and advocate for others to do so.
Nearly three-quarters of adults do not have advance directives. And of those who have them, most have not discussed them with their health care surrogate or with family. And of those who have done all of the above, fewer can locate their directives. So this year instead of talking about the importance of having these conversations and how to fill out the directives, I am asking those of you have these documents to update them.
When was the last time you looked at your advance directive? When did you last update it? A good rule of thumb is to update them when you have a major life event (marriage, birth of a child, changing jobs) or at least every five years. These guidelines will reduce the possibility that your document would be challenged by someone who believes your wishes might be outdated or not represent what you think now.
Even if your wishes have not changed, your state laws regarding them may have. In the last year alone, Florida dramatically changed its law and in Illinois the POLST document was reformatted. You should make sure that your document is up-to-date.
Can you find your advance directives? If it takes you more than 5 minutes to locate them, then perhaps you do not have them in a good place. Even better, ask someone else to locate the documents. They should be able to do so in less than 10 minutes. The documents should be easily accessible and you should give copies to your family, physician, and health care surrogate and tell them where they can find other copies. The American Bar Association says that the information on an advance directive is not private health information. I even keep a scan of mine in a photo album on Facebook (no, I won’t friend you so you can see). This is a good time to send out new copies whether on paper or using new online or mobile app storage.
And lastly, models of advance care planning in the last ten years have shown that despite previous emphasis on documentation, what really counts is having conversations with friends, family, health care surrogate, and your doctor. As I say to my students, “The documents are important, but the conversations is critical.” In recognition of this day, Death over Dinner and The Conversation Project are co-hosting dinners across the country April 16-22. These dinners are a great way to practice talking about death—gaining skill and comfort in broaching these conversations.
When was the last time you checked in with your health care surrogate? Had a conversation to update him or her about your wishes? Asked if he or she is still willing to serve in that role? As the years go by people move and relationships change. The person that seemed right 5 years ago may not be today. Check in with your designated proxy.
I asked Kottkamp what his hopes were for NHDD in ten years. He said, “I want NHDD to be as big as the Pink (breast cancer) and Go Red! (heart disease) initiatives. To be sure, it should be even bigger. Indeed, breast cancer and heart disease affect only a portion of the population (even if it is a large portion), but 100% of us are going to die, and the majority of us will experience times in our lives (end of life or otherwise) when we cannot speak for ourselves.”
And remember, this year:
- Review your document
- Check for updates of laws and forms
- Ensure you have your advance directive in an easy-to-access location and think about redistributing copies
- Talk to your families, friends, and surrogate about your wishes and theirs.
- Check in with your designated proxy