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Tuesday, June 7, 2016

How to be an Advocate for Hospice and Palliative Care

by Lauren Drew

Front line caregiving is an all-consuming job. Even if you are technically “off the clock,” you are still carrying the emotional exhaustion of your day. You may work twelve hour shifts, and return home to care for your own family. Finding time for self-care is nearly impossible. I fully understand why most hospice and palliative care providers tell me that they just “don’t have the capacity” for advocacy. To them, advocacy is something that requires tons of time, or maybe a PhD in Political Science, or a close friendship with a Member of Congress. It requires none of these things, but at the end of a busy day, it is the last thing on your mind. I get that. But I am here to tell you that your role in the advocacy process is essential, unique, and impactful.

Your role in advocacy is essential. Due to the nature of the care you provide, there are very few patients who are able to advocate for themselves. Families working through the grieving process are still addressing their personal loss, and may not have the necessary understanding of the larger picture of care provision. It does fall to the already exhausted practitioners to tell their stories.

“But isn’t that what you do?” Yes, at the National Hospice and Palliative Care Organization (NHPCO) and the Hospice Action Network (HAN) we do a ton of advocacy on behalf of providers, patients, and families. We work with Congress, CMS, the VA and other organizations to help preserve, protect, and expand the Medicare Hospice Benefit, and promote expanded availability of palliative care. We educate legislators, policy makers, and regulators on the issues affecting hospice and palliative care, and advise them on changes that would improve both patient and provider experience. But we are not caregivers. We are not medical professionals with hands-on patient interaction. And unless you tell us what you are experiencing, we may not know how to help.

Your role in advocacy is unique. No one knows about the provision of hospice and palliative care like those who do it every day. No one understands the benefits of psycho-social care, music and art therapy, family grief counselling, and spiritual care like those who see how it improves their patients’ experiences. No one knows about the perils of NOE/NOTR data entry errors, or ICD-10 billing fiascos, or Service Intensity Add-on Payments like real hospice and palliative caregivers. We can tell Congress all day long about the numbers and the census and the quality reporting measures. But only you can talk about what it is like to attend “a good death.”

Your role in advocacy is impactful. Believe it or not, Congress lives and dies by their constituents. The Congressional Management Foundation conducts surveys of congressional offices, and how they make decisions on issues. If the Member of Congress has not already made a firm decision on an issue, staffers say that over 90% of the time, an in-person visit by a constituent is the most impactful advocacy strategy. Not lobbyist dinners or campaign contributions, but in-person meetings with the constituent themselves has the biggest impact. Additionally, over 98% of staff said that “attending events in the district” is the best method of understanding their constituents’ needs. If your program has an annual 5K, Family Barbecue, or Veterans Day Event, invite your Member of Congress!

Now, what NHPCO and HAN can do is make the advocacy process easier. Hopefully after reading this, you understand how important your role is in the advocacy process, and want to do your part. HAN streamlines this process for you by providing the resources you need to find your Member of Congress, educate yourself on the issues, and connect with your Member in efficient yet impactful ways. Here are some easy first steps:

If you want to get more involved, you can check out our Advocacy Toolkit for tips on requesting meetings with your Member of Congress, inviting them to events, and building long-term relationships.

Hospice Action Network will also be hosting the June 8 #HPM Tweetchat, talking about just these issues! Come by and learn a little more about advocacy, policy, and ask your questions! We will be soliciting specific stories relevant to the Care Planning Act and Rural Access to Hospice Act at the end of the hour, so please review the briefs and come prepared to share your experiences!

Topics for the evening include:

T1: What do you think Legislators need to know about hospice and palliative care that they don’t? Who else besides your elected officials need education?

T2: How can we close these gaps and better educate Legislators (and others) on these issues?

T3: What resources do #hpm providers need to be better advocates? How can we encourage more providers to participate?

T3.5: Is there anything that prevents you from advocating? Any barriers that need removal or misconceptions that need clarification?

T4: Specifically now, having read our briefs on the Care Planning Act and the Rural Access to Hospice Act, how can we help advocate on behalf of these bills? Please share any personal experiences with advance care planning, concurrent care, or rural care that would be relevant to these bills!

I hope you will join us on Wednesday, June 8 at 9pm EDT!

Lauren Drew is a Program Associate for Grassroots Advocacy at the Hospice Action Network. You can follow her on Twitter at @GrassrootsDrew.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 6/8/2015 - 9p ET/ 6p PT
Host: Lauren Drew  and Hospice Action Network 

 and go to for up to date info.

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This post was co-posted at the Hospice Action Network blog.

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