By Nathan Kottkamp, founder of NHDD
I serve on several hospital ethics committees as part of my health law practice, and I am repeatedly confronted with a very disturbing issue. Time and time again, families, providers, and hospital administrators struggle to interpret the wishes of patients who never made their healthcare wishes known (or failed to complete an advance directive to record their stated wishes). These families and professionals do their best to advocate for what they believe their loved ones or the patient would want or is in their best interests, but they are inherently doing so without any guidance, and it is agonizing. I founded National Healthcare Decisions Day (April 16) because I know that we—both potential patients and healthcare providers—can do a much better job of making our wishes known and then honoring those wishes to avoid these very sad situations.
I was just 20 years old when I completed my own advance directive. I was in college, working for a healthcare decisions advocacy group. It was empowering to know that my loved ones knew my wishes. I now know that I was an outlier to have created an advance directive when I was so young, but the fact is we all should discuss and document our health care wishes, regardless of our age or current health status. Indeed, the three most famous cases regarding health care decision-making involved women in their twenties: Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo. Need a young male example? Lance Armstrong was 25 when he was diagnosed with cancer. Of course, beyond these examples, anyone who has been diagnosed with a serious illness and anyone with a large family (where there is an inherent possibility of disagreement) should complete an advance directive, particularly one that names a specific agent for healthcare decisions. It is also important for anyone in a long-term relationship, but who is not married, to appoint their loved one as their agent in writing because most states only recognized spouses and blood relatives as default decision-makers under the law.
Because of these examples and countless others affecting people of all ages, I have been working diligently with all those who share my vision of demystifying advance care planning and ensuring that it becomes a routine part of everyone’s lives and healthcare experiences.
I founded Virginia Advance Directives Day in 2006, which enjoyed participation by every single hospital in Virginia (along with a host of other providers and organizations). We repeating this feat in 2007, and I knew we had a great model to take nationwide, which we did in 2008. Since then, NHDD has resulted in over million healthcare providers receiving advance directives education, over half a million members of the general public receiving education, over 14,000 advance directives being completed, and it has helped raise awareness of the importance of advance care planning; helped inspire activity that likely would not have taken place otherwise; and forged several new collaborative efforts. But, we’ve still got a long way to go to ensure that everyone has taken action to make their wishes know, so I hope to see NHDD grow bigger and better in 2011 and beyond.
As NHDD continues to grow, I hope to see more positive stories in the media about the shared belief (regardless of politics, religion, or ideology) that it is important to know a patient’s wishes—whatever they may be—and to honor those choices to the greatest degree possible. I also look forward to a massive, ever-growing social media campaign—check us out on Twitter and Facebook—and grassroots campaign to push NHDD out more broadly.
I hope that everyone will realize that advance care planning is a gift to loved ones. Studies suggest that most of us know that we should “Have the Talk” but only about a quarter of us have. I hope that people will mark their calendars for April 16, assemble their loved ones, and just do it. Sometimes we just need a catalyst. National Healthcare Decisions Day is it.