A Palliative care nurse shares her stories, and you should, too

Photo Credit: Kacso Sandot
Photo Credit: Kacso Sandot

Here at HAN, we are always promoting the notion that front-line caregivers and their personal stories are key in educating and advocating for hospice and palliative care. In a new book, “The Shift: One Nurse, Twelve House, Four Patients’ Lives,” palliative care nurse Theresa Brown tells us her stories, and in doing so highlights the important role hospice and palliative care nurses play in helping families have those difficult but necessary conversations about the end of life. Brown says, “There can be a lot of secrets kept and silences. … One thing that palliative care can be really good at is trying to sit with families and have those conversations.”

As a Hospice Advocate, when you see a story like this, don’t be afraid to tweet it or post it to your Member of Congress’s Facebook wall. Members of Congress need to see what their constituents are passionate about, and if you feel uncomfortable telling your own story, you can still get our message out by sharing stories like these.

Have a question about how to interact with your legislators? Check out of some our online resources here, or send us an email! We are always happy to help!


Effectively Using Facebook for Advocacy

I wanted to take the time today to give you all some tips on using Facebook to advocate for hospice and palliative care! I know you follow us, and that is great, but there are some more things you can do to help get the message out!

  1. A like is great, but a share is even better!

    1. We love that you like what we post, but if you like something, you want other people to see it, right? We don’t want to only preach to the choir, but also reach out to people who need to be educated on the benefits of hospice and palliative care. You can help us do this by sharing our posts to the rest of your friends!
  2. Share our posts, or post our links, on your Member of Congress’s Facebook page

    1. Did you know that not only can you share our posts to your legislator’s timeline, but you can also take any of our resources (The Care Planning Act, PCHETA, and Hospice Care Access and Improvement Act, for example) and post them to your Member of Congress’s page? You might say something like this:
      1. Please support the Care Planning Act, Senator XXXX. I live in the state of XX, and as a hospice supporter, it is important for all Americans to have access to quality care at the end of life.
      2. Please support the Hospice Care Access and Improvement Act (HR3037), Congressman (or woman!) XXXX. I live in the town of XXXX (make sure it is in their district!), and as a hospice supporter, it is important for all Americans to have access to quality care at the end of life.
    2. When posting to a Member of Congress’s page, make sure you use their name, and show them that you are a constituent by stating your state of residence for the Senators, and town of residence for the Representatives. Tell them why hospice matters to you, and let them see your passion.
    3. Make sure your spelling and grammar are correct, and you maintain a positive tone. Staffers ignore people who appear to be ranting or type in all capital letters, and it can make your cause look bad, too.
    4. It only takes a few posts to have an influence on a legislator, so get your friends and coworkers to post, too! Every post helps!
  3. Make sure you add HAN to your See First list!

    1. Facebook has a tricky way of not always showing you every post that your groups share with you. To combat this, you can add HAN to your See First list! You can also click Get Notifications so you are notified when we have added something new. That way you won’t miss a single post from us!SeeFirst

Do you have any questions on how to use Facebook for advocacy? Let us know in the comments, or email me! Happy Facebooking!

Executive Director Jon Keyserling on the Pope, John Boehner, and the Impending Shut-Down

The following is a guest post from HAN’s Executive Director Jon Keyserling on what is REALLY going on in Washington:

Wow.  What a crazy week.

The Pope comes to Washington, Speaker John Boehner resigns, and there is a threat of a government shutdown.  Let’s be clear, two of the foregoing may be related, and the third is probably not (but, stay tuned to the cable networks.  They might be able to somehow tie them all together).

So, what, if anything, does all this mean for the hospice and palliative care community?  Fair question.

Some are saying that Boehner's departure will help avert a shutdown...We aren't sure about that, but we do know there will be one more parking space on Capitol Hill!
Some are saying that Boehner’s departure will help avert a shutdown…We aren’t sure about that, but we do know there will be one more parking space on Capitol Hill!

Probably not much, other than pretty much of the same partisanship and pointed rhetoric flying across the Capitol, all directed toward the upcoming elections in 2016.  As was mentioned right after the last election, the question for Congress was whether they were interested in campaigning or governing.  Clearly, we have their answer.

In the meantime, if the Congress is unable to come up with a budget deal to avert the shutdown, hospices will continue to be paid, as they were during the previous government shutdown in 2013.  The question is still unanswered about whether or not the states will be able to implement all the requirements of the new payment model.  But, we are working closely, in partnership, with the state organizations (as well as CMS) to do everything we can to assure the transition to the new payment model.

Our advocacy for the hospice and palliative care community continues, in a bi-partisan, substantive manner.  We are trying to steer clear of politics and some of the craziness that colors everyone’s perceptions of Washington.  Our professional staff at NHPCO and HAN, along with our seasoned lobbyists, are a constant presence on the Hill.

And, you play a huge role in carrying the hospice and palliative care message to our elected leaders, both during the hugely successful Advocacy Intensive (we have already started planning for next year, and the year after), and at home, with site visits and neighborly contacts (after all, Members of Congress are your neighbors).

So, to the extent you can, tune out the noise and stay in touch.

Never Stop Learning

So part of the benefit of working in Washington, DC is that on any given day, there are experts talking about really interesting and applicable advocacy ideas. I was lucky enough to attend two different seminars this week on advocacy strategy. One was presented by the Public Affairs Council on Digital Media Monitoring, and the other was presented by Advocacy Leaders Network and the Congressional Management Foundation on Psychology in Advocacy. I will spare you all of the nerdy details (that I excitedly blurted out at Tony when I got back to the office), but here are some interesting tidbits I think you all will enjoy:

Polling is a tricky mix of math, language, and psychology
Polling is a tricky mix of math, language, and psychology
  1. Congressmen LOVE site visits. They listed it as the number one most influential activity that an advocate can take in the district.
  2. Social Media is a valued form of constituent communication. Congressmen are starting to value advocacy via social media just as highly, if not more so, than emails and phone calls. In-person meetings with personal stories will always be the gold standard, but it only takes 10-15 good social media posts on an issue to get attention of an office.
  3. Share it! “Liking” a post on Facebook or “favoriting” a post on Twitter is good….but the more important action an advocate can take is to Share or Retweet something so that the message reaches a wider audience.
  4. Your Parent’s are To Blame: From the Psychology of Advocacy: did you know that there are about 9 different types of political worldviews? and that they are heavily influenced by the type of parenting you had a child? People tend to look for leaders who, in either subliminal or more obvious ways, mimic their parents.
  5. Preconceptions REALLY matter in advocacy. A recent poll was conducted that took traditionally Republican policies, and labeled them as Democrat policies. People who self-reported as a Democrat then ranked those policies favorably. They did the same thing with traditionally Democrat policies, and labeled them Republican policies. People who self-reported as Republican then ranked those issues favorably. The same poll was then conducted with the policies being labeled correctly, and as one would guess, Republicans ranked the policies labeled Republican high, and those labeled Democrat low. Same for the Democrats, even though they were the exact same policies that they had ranked the exact opposite in the first poll. Lesson here? Discuss your issues without using language, people, or ideologies that may hit your audience’s biases. If something is presented as belonging specifically to one party, or one ideology, or one partisan person, people may disregard it even if absent those indicators, they would have supported it. (Humans are strange, huh?)

The Pope Addresses Congress: Engaging with Legislators on a Spiritual Level

Pope Francis speaks at a joint meeting of the U.S. Congress in the House. Photo Credit: ABC News
Pope Francis speaks at a joint meeting of the U.S. Congress in the House. Photo Credit: ABC News

Pope Francis landed in Washington, DC yesterday, and today became the first Pope to address a joint meeting of the US Congress. Regardless of their personal religious affiliation, many Members of Congress have been expressing their appreciation of the Pope and experiencing a sense of heightened spirituality. While separation of church and state is a central tenet of our democracy, many legislators do draw on their faith when addressing difficult issues, and many will make overtly religious statements during campaigns. A legislator’s spiritual beliefs can be a help, or a hindrance, when it comes to discussing care options at the end-of-life. Certain religious traditions have strong beliefs about medical treatment, end-of-life traditions and prohibitions, and rules for grief that govern surviving family members.

When you are working with a Member of Congress with a strong spiritual belief, it is necessary that you consider how that belief may affect their perception of your issue. It may be helpful to reach out to members of that faith community to discuss with them their concerns, their traditions, and any questions they may have on your issue. Having them on your side could be a big help when you are lobbying your Member of Congress. Additionally, some faith communities are already very active in the hospice/palliative care movement, and they may have hospice chaplains or other spiritual members of their IDT that could be key influencers for you and should accompany you on meetings with the Member.

Have you been able to successfully connect with a legislator through non-traditional means? Let us know in the comments!