NY Times: Racial Disparity in Hospice, and what are we doing about it?

There was an article posted today by Sarah Varney in The New York Times entitled,A Racial Gap in Attitudes Toward Hospice Care.” It states in part that, “nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.

The article goes on to further discuss this disparity, and I recommend you take a moment to read it. The article makes some very valid points. I’d like to take this opportunity to share some of the great work NHPCO, is doing to educate under-served communities about the benefits of hospice.

To help address this disparity in end-of-life care, the National Hospice and Palliative Care Organization has created a Diversity Advisory Council – a group of hospice and healthcare professionals and experts who will work to increase access to hospice and palliative care services. The Council assists with the development of additional resources and tools related to serving diverse populations.  The group offers recommendations and educational content to NHPCO members who are seeking to connect with diverse populations in the communities they serve.  NHPCO is also forming partnerships within African American communities to help educate consumers (families, patients and caregivers) on hospice and palliative care.

NHPCO is also bringing educational resources to hospice providers so that they can better communicate their services within these diverse communities.  At the upcoming Clinical Team Conference, one of the featured pre-conference seminars will touch on these issues:

  • 9603c11ac916382823befd2770913a992015 Clinical Team Conference and Pediatric Intensive
    Gaylord Texan Resort and Convention Center in Grapevine, Texas
    Wednesday, October 14, 2015, 9:00 am – 5:30 pm
    PC02 – Best Practices for Improving Access and Outreach to Communities of Color in End of Life Care
    Richard Payne, MD, Duke Divinity School, Durham, NC
    Kimberly S. Johnson, MD, MHS, Duke University, Durham, NC
    Corey Kennard, MS, KINGDOM Equipping Ministries, Detroit, MI

If you are interested in learning more about these initiatives, or how you can get involved, please contact Cozzie King, Manager of Access Programs at NHPCO. She graciously contributed the information for this blog post and is a wealth on information on hospice and access issues.

Frequently Asked Questions About Membership in HAN

mailboxI manage the HAN email account, and lately I have been getting a lot of questions about joining HAN. I figured I’d put together some easy answers, not only to address those questions but also for all of you to tell your friends about how easy it is to join HAN and stay informed about Hospice Advocacy!


  1. Does it cost anything to join HAN? Are you going to bother me for donations?
    • While we will always accept free money (Who wouldn’t?!), we are an absolutely free organization to join. Most of our members do come from hospices who are also NHPCO members, but anyone can join HAN, regardless of the membership of their employer or not. We will not solicit you for donations.
  2. Do you have to be a CEO, RN, MSW, etc. to join HAN?
    • You do not have to have any specific hospice employment at all to join HAN. You can be a family member, volunteer, patient, staffer, or just supporter! All that we require is that you have an interest in supporting the hospice movement.
  3. Well that sounds great, how do I sign up?
    • I get a lot of emails asking to be ‘added’ to our list. Unfortunately, to adequately match people with their correct legislators (an important point when you are lobbying Congress), we need to collect information on a person’s address. Therefore, we have this nifty sign-up page that covers all the information we need to help you be an effective Hospice Advocate. Just go to this page, fill out the information, and you are automatically added to our list of Hospice Advocates!
  4. How will I hear about what is going on with HAN?
    • HAN communicates mainly through email, so please make sure you register with an email address that you check frequently. If you are not getting information from us, make sure we aren’t ending up in your Spam or Junk folder. If you are getting too much email from us (sorry!), please let us know and we will put you on a “lesser contact” list. If for some reason you no longer want to hear from us at all, you can unsubscribe from our mailing list through a link on the bottom of our emails. If you do this, however, you will not get ANY emails at all, ever. So we do not recommend this.
  5. I am super excited to be a Hospice Advocate! What else can I do?
    • Once you have signed up, please check out the website, and specifically the Grassroots Tools section. Here you will find information on how to interact with legislators, how to write a letter to the editor of your local paper, and how to host a site visit at your hospice (if you are a staffer). Check out the Policy Resources page to learn the specifics of hospice policy. We also have recorded webinars, example documents, and other suggestions to support your Hospice Advocacy!

I hope that answers most of your questions about joining HAN and getting started as a Hospice Advocate! We love all of our advocates, and always enjoy adding more and more supporters to our mission! Please email us if you have any other questions!

How the Other Half Lives

Just a quick blog hit today- I found an interesting article in one of the DC publications that I thought our advocates might enjoy titled “How to Kick That Mid-August Recess Slump“. It’s a quick listicle aimed at the DC staffers that work for Members of Congress (if you came to the 2015 Advocacy Intensive, these are the folks you met with).

It’s just an interesting little slice of advice aimed at the folks whose hearts and minds you work hard to change for hospice. Take a quick look and see how the other half lives.


HPM Chat Review: Engaging More People on #EOL Care

Last night, the weekly #HPM Chat focused on how to increase engagement around end-of-life (#EOL) care and more specifically, advanced care planning (#ACP or #AdvancedCarePlanning). Most, though not all, participants agreed that social media outreach is a good way to engage people, especially younger people, on a topic they might not otherwise consider in their daily lives. The ZDoggMD video was mentioned as a good example of discussing the issue in a new and interesting way. Other comments included:

Bobbi Kristina, daughter of Whitney Houston
Bobbi Kristina, daughter of Whitney Houston, died at age 22 after brain injury following an accident.

1. Addressing news stories related to EOL: Bobbi Kristina, Lauren Hill, etc. How/Should we engage on these topics in a respectful manner, and also use them to highlight the need for end-of-life planning?

2. How to engage more families and patients in being their own advocates: this is a difficult subject, and certainly even more difficult when it is personal. Is there a way to engage families and patients that can be cathartic? Certainly not everyone would want to publicize their story, but should we have more avenues for those that do? What would that look like?

3. The role of attorneys in EOL care. Should there be one? Do they have a place on the IDT? This was a very contentious topic, and certainly can differ state-to-state.

There were other topics of course, but these three stuck out to me as particularly interesting. I’d love to hear your take on these issues! Do you have an idea for social media engagement? A video or campaign that you think would be useful to the movement? What do you think about roles for other professions in end-of-life planning? Let us know in the comments!

Why do we do the Advocacy Intensive? From the view of a lobbyist…

I recently asked another hardworking group at HAN– our lobbyists– to reflect on the Advocacy Intensive and the fly-in process in general. Here, they give you some ‘inside-baseball’ analysis of why we do this, and the impact it has:

Working with the Hospice Action Network (HAN) is a special privilege for The Nickles Group, and we look forward every year to the hospice advocacy intensive fly-in to spend time with the many special hospice caregivers that do such important work.  Several of us have had personal experience with hospice, and know and appreciate, first-hand, the tremendous work and great comfort that you all bring to hospice patients and families at the most difficult and vulnerable times.

Many stakeholder groups do Capitol Hill fly-ins – you probably noticed several other groups during your time on the Hill.    That so many groups and organizations arrange these days on the Hill, speaks to the importance of face-to-face meetings with Members and staff. 

But there is a special significance to the HAN fly-in.  While we, along with NHPCO and the rest of the consulting team, work diligently on a day-to-day basis to ensure that your voice and your patients’ voices are heard in Washington, nothing resonates so strongly as hearing from all of you.  Your stories, as nurses, doctors, chaplains, aides – as those who spend their days offering comfort to patients and their families – are incredibly impactful. 

This is important, because in the weeks and months following your visit, Members and staff will remember you and your conversations. And when we go in to advocate on your behalf, they will not just see your Washington representative, they will remember all of you and hear your stories.  Talking about the importance of hospice, or why a particular policy measure is important because of what it will do to hospice, is one thing.  It is entirely another to see and hear from those who work day in and day out to carry out the mission of hospice.

And so the HAN fly-in is incredibly significant and meaningful.  For those of us who advocate on your behalf, our efforts are buoyed by the long lasting impact of your visit, and in turn, so is hospice. 

We very much look forward to seeing you all next year!

Mary Beth Savary Taylor, Stephanie Badger, and Jeff Choudhry