This is the most exciting news you will read all day! Well…ok maybe not, but it is a happy day for us here in the HAN offices. We are proud to unveil our brand-new, state of the art, extra shiny and super fast Hospice Action Network Website!
I will wait while you click to check it out.
“But….but it looks like the old one!”
Yes, yes it does. We intentionally didn’t want to reinvent the wheel, and we didn’t want to confuse all of our loyal visitors by completely changing the entire look and feel. Most of the changes are on the back end (where we work!) to make it function better and allow us to do more things. We tweaked the style just a bit, to keep it looking fresh, and we will be adding pages and some interactive material as well.
I know the subject line of today’s blog makes no sense so I will clarify it here: Tomorrow, the HAN website will be offline getting some much needed updating. We still have phone and email though! So we will still be here, working hard for you.
And now for the meat: The Dallas Morning News published an interesting Q&A with Dr. Atul Gawande in their Sunday Points section yesterday. They had promoted Dr. Gawande’s Being Mortal in their 2015 Points Summer Book Club. The article is worth a read, but I wanted to point out what I felt was one of the most important points.
Dr. Gawande reliably promotes the idea of planning for treatment. He tells this short story:
“I tell the story of the father of one of my colleagues who said: “If I can eat chocolate ice cream and watch football on television, that is worth living for. But take that away, and it’s not.” That’s like the best living will ever. It was very clear what he wanted and what mattered most and what he wanted treatment to preserve for him.”
Dr. Gawande specifically enumerates the questions that patients should be asked by their doctors:
What’s your understanding of where you are with your illness or your health at this time?
What are your fears and worries for the future?
What are your goals and priorities if your health worsens?
What are you willing to go through and what are you not willing to go through in seeking treatment for more possible time?
These are the types of questions that should be addressed in all advanced care planning discussions. As Congress awakens from their sleepy August recess and prepares to get back to work, stay tuned for information on the Senate Care Planning Act, and a companion bill in the House. I hope you have been working on your congressional relationships over recess, so we can start pushing these important bills through Congress this fall!
This October, I’ll be headed out to Grapevine, TX to go to NHPCO’s Clinical Team Conference. I have always enjoyed CTC, because much like the Advocacy Intensive, it gives me the chance to interact with clinical and frontline hospice workers. It’s always a shot in the arm- I love having conversations with folks from hospices around the country.
One of the best parts about talking with these folks is that I can explain to them in practical ways the effects of hospice policy here in DC. It’s always interesting to get to sit down and talk with a social worker and explain that the Isakson/Warner Care Planning Act would rely heavily on their expertise to help explain all care options available to patients. Likewise, talking through the ramifications of the new payment methodology with a CNA is fun (in a weird ‘only in DC’ kind of way…), because you can help them to see how those changes would likely affect their caseloads and responsibilities. Above and beyond just explaining policy to frontline staff, you have the opportunity to engage them in the process as Hospice Advocates, and that’s where the rubber really meets the road. Everyone’s voice matters!!!
One of the things HAN’s grassroots program has really strived to do in the past few years is make these complex policy challenges accessible to the entire hospice community, and CTC has always been a proving ground for helping us test out our explanations. If you’ll be there, come and find me at the NHPCO Pavilion, or tweet at @GrassrootsTony– I’d love to meet up and have a cup of coffee with any Hospice Advocate!
A reflective piece by Kristen McConnell in the New York Times, The I.C.U. Is Not a Pause Button discusses the difficult situation of intensive intervention at the end of life, and how just because a patient is in the I.C.U, those days still matter.
Importantly for our advocacy efforts, she clearly points out the need for Advanced Care Planning:
“Unless the medical record contains an order limiting the measures that can be taken, originating from the patient, his next of kin or his designated proxy, interventions to keep him alive will continue indefinitely, regardless of the anticipated outcome in quality of life.”
We need more people with first-hand knowledge of the difficulties families and patients face at the end of life to document and communicate what they know. The author, Kristen McConnell, is a nurse willing to share her experiences with the wider world. It is great for us to talk among ourselves, commiserate and support one another. But we also have to reach out, and talk to those people who don’t deal with these issues on a day-to-day basis. So if you feel inspired, write it down! A paragraph here, a tweet there: start talking about what you know. You don’t have to be Shakespeare or have a degree in journalism to write what you know. Consider submitting articles to your local paper, or to us here at HAN! Maybe you will get a guest post on our blog! Never hurts to try…
But, importantly for the end-of-life care community, Surgeon and Author Dr. Atul Gawande is back on the list this year, coming in at number 10. Do you recognize anyone else on this list? What can we do to raise the profile of people active in our movement? Are you surprised that anyone is not included? Let us know in the comments!