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The Origins of National Healthcare Decisions

Nathan Kottkamp is the Founder and Chair of National Healthcare Decisions Day.

Below is the short version of how National Healthcare Decisions came to be, and where it’s going.

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 TwitterFacebookLinkedInFacebook Causes—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.

Nathan Kottkamp

Founder and Chair

National Healthcare Decisions Day

your decisions matter

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Suggested Outreach Activities

Below are some specific ideas and suggestions for ways to implement National Healthcare Decisions Day (NHDD) activities in your community and at your facility on April 16
First and foremostlead by example…be sure you have thoughtfully considered and made your own healthcare decisions known.
  • Next, make sure everyone in your organization is informed about NHDD (including staff, board of directors, volunteers and others) and ask for their involvement to promote NHDD in your community. (Suggestion: Have staff wear a sticker that says “Ask Me About Advance Directives!”  See sticker template located above in the Outreach Resources section.)
  • Set up an exhibit about NHDD at your main entrance and offer information about advance care planning as people come by.
  • Partner with other local organizations to promote NHDD. You will reach and benefit more people if you do this with others than alone! 
  • Distribute NHDD promotional materials and advance care planning educational brochures at upcoming community events or health fairs. 
  • Give a presentation to community organizations (i.e. Rotary Club, senior centers, workplace settings, faith communities, libraries, patient or family support groups, neighborhood associations) and to the public promoting NHDD and offering advance care planning resources. 
  • Sponsor a community event or “town hall’ meeting about advance care planning. Big events are more likely to generate media coverage than small presentations and they offer an opportunity for more in-depth dialogue with your community. (Suggestion: Ask your local bar association and healthcare organizations for volunteer speakers and/or ask local politicians to attend and publically sign their own advance directive.)
  • Provide a link on your organizational Web site to www.nationalhealthcaredecisionsday.org. This is a national Web site with a variety of information for the public and providers on advance care planning.
  • Partner with your community library to set up a display highlighting books about advance healthcare decision-making and use NHDD promotional resources.
  • Set up exhibit tables at your local malls, pharmacies, grocery stores, or other locations to provide information about advance care planning and advance directives.
  • Partner with local retail businesses by asking them to place a promotional flyer about NHDD in every bag. 
  • Send out a press release about your NHDD activities and/or events to your local media. 
  • Publish an Op Ed, letter to the editor or a feature story about the importance of advance care planning in your local newspaper.
  • Print advertisements in your local newspaper or other local publications, resource guides and newsletters about NHDD activities. (Suggestion: Ask to print the advertisements as public service announcements and see if they will also publish a copy of your state’s advance directive form.) 
  • Offer to provide a guest-speaker on health-related radio or TV programs about advance care planning and NHDD. 
  • Distribute flyers about NHDD in local physician offices and other strategic locations such as elevators in public buildings. 
  • Distribute information to patients at healthcare facilities with their mid-day meal.
  • Encourage your state leaders to establish a state-sanctioned, secure on-line advance directive registry.
  • Mention NHDD in your organizations's/facility's telephone on-hold recording. 
  • Be creative about the topic of advance care planning.
If your organization has additional ideas for NHDD community activities that we can share with others, please contact nhdd@klxmedia.com.  Thank you for your support!

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Are advance directives effective?

Imagine that you are caring for Ted, a patient in hospice who would like to go from Los Angeles to Michigan to see his family one last time. His same-sex partner opens up to you that he is worried about what would happen if Ted became sick while in Michigan, as his family there are very religious and don’t necessarily agree with Ted's end-of-life wishes. Not to worry, you say, Ted has a valid advance directive that his same-sex partner is his health care agent. Then you pause and think. Hmmm… Maybe there is something to worry about.

That is the start of a great post by Dr. Eric Widera at the blog Geripal.  What a dilemma, huh?  Dr. Widera, a palliative care and geriatrics specialist at UCSF, does an excellent job using this setup to dissect the recent journal article in the Annals of Internal Medicine, Lost in Translation: The Unintended Consequences of Advance Directive Law on Clinical Care.

The key findings include the following five barriers to effective advance directives:

  1. Inadequate reciprocal recognition among states
  2. Restricting surrogate decision makers
  3. Poor readability
  4. Burdensome requirements to complete advance directives
  5. Religious/social/cultural concerns
Dr. Widera goes into details on these barriers in his post.  Thankfully the authors of the article suggest some solutions.  And the many people who support National Healthcare Decisions Day have some great solutions too:

The great thing to see is that many people are talking about this issue on the Geripal post.  Go add your two cents just like the NHDD Chair Nathan Kottkamp did!

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