Heading Into the Home Stretch!

TonyDarcyWe are buzzing along like a finely-tuned machine here in the HAN offices….if a finely-tuned machine ran on iced coffee, take-out food, and spreadsheets. We have completed two of the three preparatory webinar offerings for the impending Advocacy Intensive (SIGN UP IF YOU HAVEN’T ATTENDED ONE YET!), and have received some great questions from you all!

We will also be hosting a special LiveStream event at 3:00pm EST Wednesday. Hannah Wesolowski from the Public Affairs Council will be speaking with Tony regarding “Do’s and Don’ts of Meeting with Legislators in the Home District“. This is a great way to start planning for your Member of Congress to visit your hospice during the August recess, and is relevant to those attending the Advocacy Intensive as well as those advocating from home.

Speaking of those of you playing “Advocacy Intensive- the Home Game,” look for a special email coming out about our Virtual Hill Day. We will be live broadcasting on Tuesday morning, 7/14 from the Regency Ballroom at the Hyatt Regency Capitol Hill. You can participate in the Pep Rally and help support your advocates on their way to their Hill Meetings!

As a part of the Virtual Hill Day, we will have another Click2Call campaign, similar to last year. We will be asking all of you playing the home game to use our module to call, Facebook, and Tweet your Members of Congress– all while your friends will be there in person! It is a multi-pronged approach to make sure we get Capitol Hill’s full attention!Wood

So stay tuned for all these exciting events. We will be busy stuffing envelopes, making badges….and building a tree-house? What is this? Who ordered it? What is it for? I guess we will have to wait to find out….

I am hoping for a tree-house.

Care Planning Act is Burning Up the Internet!

Another strong article yesterday by Bruce Japsen and featuring our own Jon Keyserling in support of the Care Planning Act. We are so happy to see this getting serious traction in the news and on the Hill!

 

In the lead up to the Advocacy Intensive, it is important for our advocates (both at home and in DC) to think about their hospice stories. Did you have a patient who would have benefited from having something like the Care Planning Act? Did you know a family that was able to have a beautiful end-of-life experience because their loved one had a clearly established plan? Think about your experiences in the context of this proposed Care Planning Act, and be ready to tell these stories to your Members of Congress, both in person and via our Virtual Hill Day.

 

 

A Quick Note of Thanks

As many Americans mark this weekend with barbecues and fireworks,  we are so thankful for the many of you dedicated hospice advocates that will be working this holiday weekend. What could be more patriotic than caring for your fellow Americans, many of them veterans? You represent a cross section of America: the rural workers who drive hundreds of miles to visit patients, the urban caregivers who brave traffic, subway delays, and holiday crowds to visit their diverse communities, everyone who has to skip the party and can’t take their kids to the fireworks because they are caring for their patients. You, and your families, give up a lot so that your patients can receive the care they need, when and where they need it.

Thanks to all who are traveling to patients this weekend!
Thanks to all who are traveling to patients this weekend!

So thank you, everyone who is working this weekend. Everyone who covered a shift so someone could be with their families, everyone who had to miss the fireworks. Your dedication to your fellow Americans is honorable, patriotic, and exemplary. Thank you for all you do, and have a fabulous 4th of July.

We’re getting to the fun part.

So days like today sorta rock.

Lauren and I spent most of the last six weeks calling hospice programs and asking them to send folks (which they did, in droves…), and Karen has been working around the clock on designing some awesome materials for our attendees. The office has been humming, but until registration closes, it can be a grind. We have a lot of ground to cover, and it’s always a nail-biter to see if we’ll get it done.

Of course in the end, we got there. It took a bit of wonderful support from Outcome Resources, but we have some awesome scholarship recipients coming in, from as far away as Fairbanks, Alaska! Overall, we’re going to have meetings with 102 critical Members of Congress, and out of those meetings, a staggering 98 will feature hospice stories told by frontline hospice caregivers. Once again, the hospice community has stepped up in an absolutely unbelievable way.

But that’s not the fun part.

The fun part is starting to happen now.

My email inbox is starting to fill up with awesome emails containing questions like this:

Hello Tony, I am a first time attendee and am working on my invite letters for the Senators and Representative that I am scheduled to meet with. I am meeting with [key Congressman’s name] in the U.S. House of Representatives.  Is there any additional greeting required / suggested because of this?  I followed the suggested form in the letter provided and didn’t want to make a faux pas!

I mean, C’MON!!! How cool is that- this advocate is pumped. She’s never been to DC, and wants to do it right. For the record, her letter intro was spot-on perfect. I could give you three or four more examples, but the cool part for me about the Advocacy Intensive is that the folks who come are so passionate to be here. If a jaded grassroots professional like me can see that, imagine what a Member of Congress will think when they hear this person tell their hospice story.

Caitlin, excited about the fun part in 2014.
Caitlin, excited about the fun part in 2014.

This is the fun part.

Why Younger People Should Support the Care Planning Act

 

Tamar was 26, and had been married for 4 years with a 3-year-old son whom she adored. In 2014, Tamar was diagnosed with spindle cell carcinoma. She passed away July 22, 2015.
Tamar was 26, and had been married for 4 years with a 3-year-old son whom she adored. In 2014, Tamar was diagnosed with spindle cell carcinoma. She passed away July 22, 2015.

Former Senator and heart surgeon Bill Frist published a column in Forbes Magazine yesterday voicing his support for the Care Planning Act, among other initiatives. He makes an important point when he says, “Americans are living longer than ever, and children are increasingly helping aging parents and grandparents manage multiple chronic conditions.”

I am not even thirty-years old, and I know several other people my age who have already had end-of-life conversations with grandparents, parents, and even siblings. However, end-of-life care is not something people my age typically think about, so when we are placed in the caregiver role, we have often never had a conversation about our own wishes, much less the wishes of the person now under our care. Many of us have little to no experience with navigating the healthcare system. It can be a scary, divisive, and lonely time.

But imagine this as a part of standard care: an interdisciplinary team of doctors, nurses, social workers, and others are there to help guide us through this difficult time. We don’t have to spend hours on the phone calling around trying to get questions answered. We don’t have to guess about options or our loved-ones wishes. We don’t have to agonize over making the wrong decision. We have one team, informing and guiding both the caregiver and the patient through making their end-of-life plan.

The Care Planning Act does this. It establishes reimbursement through Medicare for healthcare professionals to provide a voluntary and structured discussion about the goals and treatment options for individuals with serious illness. It facilitates information-sharing and decision-making to ensure that the patient’s wishes are known, and that the caregiver is informed and empowered to carry them out. This is patient-centered care at its heart. And I know for me, as someone whose most serious personal experience with healthcare is limited to getting her wisdom teeth removed, having a team on my side guiding me through this difficult time would be invaluable.

So I know many people my age do not think about death, dying, end-of-life care, or hospice on a regular basis. But that is precisely why we need the Care Planning Act. We need information and support in this difficult time, if not yet for ourselves (though perhaps one day), then for the people in our lives who may someday suffer from advanced illness.

Just my two cents.

 

Click here to support the Care Planning Act!