National Healthcare Decisions Day 2019
April 16th is National Healthcare Decisions Day (NHDD). NHDD, founded by Nathan Kottkamp and now run by The Conversation Project, exists to inspire, educate and empower the public and providers about the importance of advance care planning1,2. The date was strategically picked to fall the day after Tax Day because, as Benjamin Franklin once said, the only two things that are certain in this life are death and taxes! The subtle humor in the choice of day shows the organizations intent to normalize the act of being proactive in making healthcare choices and planning for the last stage of our lives. April 16th is not a deadline to submit your advance directives, but rather a day to jumpstart the conversation and take action in making the decisions that are right for us.
Why make a plan?
Throughout our lives, plans are usually made for big transitions like birth, education, marriage, and retirement, to name a few. We plan less often for the end of our lives, rarely completing advance directives that outline our end-of-life wishes, such as a living will. Being proactive in making these decisions can give you and your loved ones peace of mind, minimize stress and reduce potential conflicts among family members in the event you are unable to communicate your wishes. 3 NHDD exists to help people plan for the end-of-life care they desire, and for providers, facilities, and loved ones to respect and honor those wishes in the event that the person is unable to communicate or even just to get everyone on the same page.1
Where do I start?
It's hard enough to decide what to eat for breakfast, how is anyone supposed to know what they want if and when they can't communicate for themselves? We get it- figuring out where to start can be overwhelming and confusing. Here are a few tips to get the ball rolling:
- Become familiar with terms for advance care planning
- Think through who your person would be to make decisions on your behalf if you are not able to and watch "Who Will Speak for You?"
- Ask yourself some questionsand think through what matters most to you with the Conversation Project's Starter Kit
- Watch this Practice Makes Perfect video for a few conversation starters and start a conversation with a loved one
- Locate your states advanced directive forms
- tart a conversation with your medical staff during your next appointment with help from The Conversation Project's How to Talk to Your Doctor Kit
Thinking about or making decisions around end-of-life care can be overwhelming, as is anything else in life that seems uncertain or too far away to really consider. We naturally fear or avoid the unknown, and it can be uncomfortable to confront these questions or have these conversations out loud. But the best way to lessen fear around the unknown is to have a plan. That way, even if things change, you have a roadmap and can always adapt as you go.
To help get started, consider writing a letter to your loved one stating your wishes. Here's one for some inspiration. Starting these conversations can be as easy as sitting down with a loved one and having a cup of tea!
Interview with NHDD's Patty Webster
Patty Webster, MPH is an Improvement Advisor & Faculty for Community Engagement and Learning at The Conversation Project
Q:How was Nation Healthcare Decisions Day created?
Patty: NHDD was founded in 2008 by Nathan Kottkamp, a lawyer who served on several hospital ethics committees. After witnessing the struggles families face when their loved ones had never made their healthcare wishes known (or failed to complete an advance directive to record their stated wishes) - he was moved to action to create a day that could serve as a catalyst to get people talking and planning their wishes for end-of-life care. In June 2016, Nathan passed the operations responsibility of NHDD to The Conversation Project as our mission and passion for this work was closely aligned with the original vision of NHDD. While Nathan is still very much involved and provides critical leadership, TCP is a natural fit and continues to expand the reach of this open and collaborative movement.
Q:What have you noticed is working in terms of shifting the healthcare decision making process to a "lighter" topic to discuss and take action on?
Patty: We've seen a lot of traction when you make this topic more accessible and relatable to anyone over 18. Our approach is rooted in values-based conversations and helping people think about who their person may be to help make decisions on their behalf if they can't speak for themselves. This approach helps people feel comfortable with what seemingly is a traditionally uncomfortable or taboo topic. When people think this has to be a super medical or legal conversation, they shy away from it or feel unprepared to start. That's why our Starter Kits do not have any medical/legal jargon in them.
We focus on helping people think through their values and what matters most to them, which is far less scary than thinking through specific medical scenarios. When people think about what matters to them, not what's the matter with them, it becomes an easier conversation to have. And, we found that humor helps make this topic much more approachable. We have several fun videos that provide tips, scenarios, and questions that people can relate to more easily, alleviating the fear and hesitation people often have about starting these conversations. When people can see that the conversation is a gift you can give to your loved ones, one that builds deeper relationships and bonds with their family before a crisis hits, they are more likely to take action.
Q:What have you found are the biggest barriers in starting healthcare decision making conversations and then taking action after the conversation?
Patty: The biggest holdbacks to not starting these conversations are not knowing how to start and the fear that starting these conversations with loved ones will upset or insult them - we hear a lot about religious or cultural taboos. But, in reality, according to our nationally representative survey, 53% of Americans say they would actually feel relieved if their loved one initiated these conversations and 95% say they'd be willing or want to have this conversation. Another huge barrier is people thinking it's too soon to have these conversations (e.g. I'm not sick, my loved one is in good health or much too young). But, as we say, it's always too soon until it's too late.
Q:What's one piece of advice for people looking to start the conversation and make healthcare decision?
Patty: My mom shared her wishes for end-of-life with my sisters and me early and often, talking to us about what quality of life looked like for her, what she would want and what she definitely didn't want at the end. We rolled our eyes saying she was too young and wasn't going to die anytime soon - every time she brought this up. And, she brought this up often! I hadn't realized what a gift it was that she had given us all until she suffered a series of very unexpected strokes at age 73 that left her without a voice to make decisions on her own. Knowing what she wanted and being able to respect her wishes brings comfort and relief to us daily still. Think of this as the greatest gift you can possibly give your loved ones - don't wait until it's too late.
Have you ever changed your treatment regimen because you were experiencing side effects?