Happy spring everyone! Here in Seattle the weather is unseasonably gorgeous, and it makes everything better.
This is the last newsletter where I will focus specifically on upstreamists, and I want to do so around a theme: end of life planning. I would bet most of you don’t know that April 16th was National Healthcare Decisions Day (NHDD). From their website:
“National Healthcare Decisions Day(NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.
The theme for 2016 is "It Always Seems Too Early, Until It’s Too Late."
"NHDD exists as a 50-state annual initiative to provide clear, concise, and consistent information on healthcare decision-making to both the public and providers/facilities through the widespread availability and dissemination of simple, free, and uniform tools (not just forms) to guide the process. NHDD entails 50 independent, but coordinated, state and local events (necessitated by the difference in state laws and dynamics) supported by a national media and public education campaign.
A key goal of NHDD is to demystify healthcare decision-making and make the topic of advance care planning inescapable. On NHDD, no one in the U.S. should be able to open a paper, watch TV, view the internet, see a physician or lawyer, or go to a healthcare facility without being confronted with the topic of advance care planning.
Among other things, NHDD helps people understand that advance healthcare decision-making includes much more than living wills; it is a process that should focus first on conversation and choosing an agent."
I am aware that it seems incredibly onerous to sit down and think about end of life planning, but there are a lot of resources out there to simplify it. In Washington State, you don’t have to have a lawyer to sign a Healthcare Power of Attorney document (aka healthcare proxy)—in fact you don’t even need a notary. You can go online, get documents, print them out, fill them in, and give them to your loved ones! Please do this for the sake of those you care about if not for yourself.
And now for the upstreamists. The people and organizations I am going to highlight are all working to make this subject accessible to everyone, not just lawyers. The goal is to change the thinking of our society that this is just not something to talk about, or that there will be time later, but rather to take action now so that your individual wishes can be known.
The first organization I want to mention is Get Your Sh*t Together, founded by Chanel Reynolds. She founded the organization after the tragic and sudden loss of her husband in my neighborhood! Here is the story from the New York Times. This is a stunning example of “it always seems too early until its too late”.
A Shocking Death, a Financial Lesson and Help for Others
by Ron Lieber
The next organization I want to feature is Death over Dinner, started by Michael Hebb, who found out about the difficulty of helping those at the end of life when he met two doctors on a train ride. The doctors were dismayed about our healthcare system and relayed this startling fact:
Nearly 75% of Americans want to die at home, yet only 25% of them do.
His organization makes it almost fun to have these conversations:
"Send an invite to loved ones, and then set the table to start talking about end-of-life care and how we want to live the final days of our lives. We'll provide the tools and tips to get the conversation started. You choose the guests and the menu, and let the conversation and the wine flow."
Michael Hebb on TEDMED ~ What Happens When Death is What's for Dinner
And finally, The Conversation Project began in 2010, when Ellen Goodman, a well known journalist, and a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones.
Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now, and as often as necessary, so that their wishes are known when the time comes.
All of these sites have easily accessible documents for anyone to use. And I would be remiss if I didn’t mention The Five Wishes from Aging with Dignity, a website that offers downloadable living wills that help document and describe your desires for end of life care.
If you want any more information, let me know. Your family and your doctors will thank you.
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Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.