#HPM Chat review: #13APCC

Sorry I am a day late on the #HPM Chat review. This week, @SteveLandersMD hosted, and there was robust discussion on the MCCM, best practices, social media, and other topics. But for me, I thought you all might appreciate the international angle to the #HPM chat. There is of course a strong representation from the States, but this week’s #HPMchat coincided with a large conference in Australia, the 13th Australian Palliative Care Conference. I think it is fabulous to hear about the similarities and differences faced by hospice and palliative care providers around the world.  HAN works with the US Federal government, and so most of our work is geared to the American audience, but do we have any friends from abroad? Do you have any questions about the American hpm system? Do any of our American followers have questions for our colleagues abroad? Let us know, and use the hashtag #hpm and #hpmglobal to get some answers!


Public Affairs Council Webinar Featuring Our Staff!

That's me on the left!
That’s me on the left!

The HAN team is happy to announce that we have been asked to participate in the Public Affairs Council‘s Webinar: Twitter for Advocacy! I will be presenting on our use of Twitter, and how Twitter can be a useful tool in an advocate’s arsenal.

The webinar will be September 10, from 2-3 in the afternoon. Interested participants can sign up here (yes there is a cost). If you are interested in learning about Twitter, but cannot attend the webinar, please email me and we can set up a time to talk!

This is an exciting moment for me, since as many of you know, I have only been with HAN just under six months. It is a testament to the grassroots network that Tony has created, and the hard work of our advocates like you, that our advocacy efforts on social media are successful and noteworthy. Thank you to everyone who reads our blog, likes our Facebook posts, and retweets us. Social media is nothing without advocate engagement, and you guys do a great job!

Shiny New Website!

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.

Love it? Hate it? Let us know in the comments!



A Q&A with Dr. Gawande, and HAN Website Offline

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:

Dr. Atul Gawande, author of Being Mortal
Dr. Atul Gawande, author of Being Mortal

“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!

Long Reads Saturday: The I.C.U Is Not a Pause Button

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:

Shaun Best/Reuters
Shaun Best/Reuters

“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…