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.
Happy almost spring, although many of you are still being hit with snow and ice!
I want to continue the theme I began 2 months ago where I discuss “upstreamists”, those who are “going upstream” to find the cause of problems in our healthcare system, and then working directly to create change. Last month I profiled Health Leads, a nonprofit organization that is providing information and connection for low-income patients, as well as providing access to many wrap-around services that affect health and wellbeing, such as having adequate food, transportation, and heat in the winter.
Yesterday I had a very stimulating conversation with a young physician who had just finished medical school in the UK. He felt drawn to medicine by his desire to help others, like most doctors, but he did not gravitate to a particular specialty. Instead, he’s been traveling around the US talking to upstreamists in order to tap into their experiences. His network includes those that create technological tools that try to fix some discreet dysfunctional piece of healthcare, rather than affecting the whole system. All of the projects he told me about were lovely little gems. But there is a problem with creating beautiful gems.
When you have something that is rotten underneath, applying beautiful gems to it does not cure the problem; it remains rotten. We need to look deeper to figure out what we can do to impact our healthcare system, from the inside out.
Dr. Rushika Fernandopulle of Harvard University, is doing just that with Iora Health. I’ve been following him for a number of years. Here is what Iora Health says about itself:
We’re changing health care from the ground up.
We believe better health care starts with better primary care. Our simple yet radically different approach to restoring humanity to health care is three-fold: Team-based care that puts the patient first, a payment system based on care, not billing codes and technology built around people, not process. ……….
Our care team, which includes a dedicated advocate for each patient, works together to treat the whole person. We see people when they’re sick, but also when they’re well, so that we can keep them healthy. Here, the environment is caring and patients have a voice. It’s our job to give them everything they need to live happier and healthier lives.
Here is a fabulous and inspiring talk by Dr. Fernandopulle, who discusses how and why we need to change the healthcare system.
Here is a short version, but I really urge you to watch the longer one—its way more inspiring.
Happy (belated) New Year to everyone. I trust you are, like me, getting back into the flow of our normal lives after the end-of-the-year hiatus.
Last month I talked about “going upstream” and the need for upstreamists in order to have any effect on the course of healthcare in this country. Over the next few months I’d like to profile some of the upstreamists doing important work that I think will change healthcare for the better.
The first organization I’d like to profile is Health Leads. Since their founding in 1996, Health Leads “has evolved form a small student-driven campus organization to a fully staffed 10 million dollar organization with programs in 15 hospitals and clinics.”
Rebecca Onie, co-founder and now CEO, began the organization with the belief that a different kind of healthcare system is possible and that the healthcare system is in crisis. The goal was to do something about the fact that poverty has a negative impact on health outcomes.
From the Health Leads website:
“Health Leads Advocates …. Work side by side with patients to navigate the complexity of the resource landscape……… The Advocates follow up with patients regularly by phone, email, or during clinic visits.”
Watch this compelling talk by Rebecca Onie to get a feel for what this organization does.
As always, I would love to hear what you think!
Best of Health,
Sima Kahn, MD
Founder, Healthcare Advocacy Partners
I hope everyone had a great Thanksgiving, and will have a wonderful holiday season. In my last newsletter I mentioned going upstream, and here is the explanation:
There were four friends walking in the woods alongside a river, when they saw a baby floating by down the river. The friends ran to the river, jumped in, and rescued the baby. Feeling good about what they had done, the friends were shocked to see another baby floating by. Once again they jumped in to rescue the baby. But soon there were more babies floating by, and soon it seemed that the number was increasing. The friends formed a line, a “bucket brigade”, to quickly pass the infants from one to the other to rescue them as quickly as possible. And still they kept coming.
Finally, one of the friends got out of the river and started walking upstream. One of the others called out “where are you going?” The friend replied “I’m going upstream to see who is throwing babies into the river and stop them”.
I call this being an “upstreamist” and I was happy to see that term used in the article I have linked to below. Given the crisis of our healthcare system, we need to go upstream to the source of the problem(s) if we are going to really solve them.
Providing healthcare advocacy is one way to go upstream and avoid problems before they occur and need to be fixed.
Cultivate More Upstreamists to Transform Healthcare
Dr. Sima Kahn muses on being a healthcare advocate, the troubles with our healthcare system, and how to advocate for ourselves.