Arm Yourself to be a Better Hospice Advocate: Know the Facts!

From last week to this, there’s been lots of media coverage surrounding a new report released from the Dartmouth Atlas Project that shows that individuals in some areas of the country are far less likely to receive comfort care in accordance with their wishes. My colleagues and I are always saying that to be an effective Hospice Advocate, you have to be an informed advocate. So I thought we, as Hospice Advocates, should all be familiar with this new report and the media coverage surrounding it. This and other recently released research and findings will go a long way to highlight the value of quality end-of-life care in our communities, and by extension the value in our Hospice Advocacy efforts.

Last week, The NHPCO Updater – our parent organization’s blog — reported that the recently released report is the “first-ever report from the Dartmouth Atlas Project on cancer care at the end of life, [and] found that across the US, about 29 percent of patients with advanced cancer died in a hospital between 2003 and 2007. And in 50 academic medical centers, fewer than half of these patients received hospice care.” Clearly this is an issue that is deserving of our attention and an opportunity to advocate on behalf of hospice in our communities. To get varying perspectives on the report from end-of-life care experts and insiders, including NHPCO’s president and CEO Don Schumacher, I recommend reading some of the recently published articles about it. Here are links to a few of those:

There have been several studies/reports published in the past six months that highlight the value of quality end-of-life care. These studies can help us make our case for expanded access to quality end-of-life care. Here are a list of and a few highlights from the studies published by the Journal of Clinical Oncology and the New England Journal of Medicine that will help you while you work to recruit new Hospice Advocates:
1. New England Journal of Medicine (NEJM), released on August 19, 2010, highlighted the fact that among certain cancer patients, those who received palliative care lived almost two months longer on average than those who received standard care. It also highlighted that patients receiving palliative care reported a higher quality of life through the final course of their illness. These findings are supported by earlier studies done by the Journal of Pain and Symptom Management in 2004 and 2007 (See the NHPCO press release).
NHPCO’s press release from August 19th as well as the study abstract on NEJM’s website are available for your review online.

2. Journal of Clinical Oncology (JCO) study first released on September 13, 2010 was about the probability that dying at home may be less traumatic for patients and their family caregivers. It stressed that:
• Among patients who died in the hospital, the quality of their life at the end was rated as lower with more physical and emotional stress;
• For caregivers, those whose loved ones did not die at home faced greater risk of psychological problems within six months of death;
• Caregivers were five times more likely to have post-traumatic stress disorder.
The JCO website abstract is available for extensive details of the study.

3. JCO study led by Mount Sinai School of Medicine and that was released on October 1, 2010 is about cancer patients who disenroll from hospice, and ultimately experience difficulty at the end of life. This study stresses that cancer patients who disenroll from hospice generally:
• Have Increased hospitalization;
• Are less likely to die at home;
• Use five times more Medicare expenditures than their counterparts who die at home.
Click here for NHPCO’s press release as well as the study abstract on JCO’s website are available for your review online.

Arm yourself to be a better advocate, research and read up on these studies so that you can use the facts to support your local Hospice Advocacy efforts. If you have questions, comments or concerns, share them with me and the rest of the HAN team below. We’re here to help you help hospice!

The 2010 Elections are Over! Now What?

It’s just a few days after the elections. We’ve all cast our ballots. Some election results are still being tabulated as I type this post. However, many of the races have been called; victory and concession speeches have been given. Now, there‘s a big class of new policymakers preparing to take their seats in the 112th Congress at the beginning of the year. But what does it all mean? The dust is starting to settle and based on a number of queries to the NHPCO Hospice Action Network (HAN) headquarters, you want to know what the implications are for the hospice community. And, I want to give you answers. I’m not a full-fledged policy wonk, just a PWIT (policy-wonk-in-training) so bear with me.

That said, here are a few things we know for sure…

  1. The hospice community has always, ALWAYS, always enjoyed the support of both Democrats and Republicans in both chambers of Congress.
  2. Bipartisan support for hospice is not going to change because quality, compassionate and cost-effective end-of-life care is a far reaching concern for most people in this country. Hospice support will continue to bridge many gaps; not the least among them party affiliation.
  3. Working with existing Hospice Champions on the Hill this year, NHPCO HAN and Hospice Advocates started laying the groundwork on several fronts to ramp up the fight to protect the Medicare Hospice Benefit as we know it. It seemed like Hospice Advocates were everywhere at once- from getting several beneficial provisions for hospice passed in the Affordable Care Act (ACA) to gaining wide-spread support for the Harkin-Roberts hospice payment reform letter to Health and Human Services.
  4. With the election of more than 60 new Members of Congress, we have an awesome opportunity to educate and cultivate new Hospice Champions on the Hill.

Based on what we know, I think we can draw several conclusions about what the election results will mean for Hospice Advocacy on the Hill. In my view, it means that not a whole lot has changed for us in terms of the way we approach advocating for hospice. We need to continue educating Congress, especially the newly-elected officials. As they work to get their arms around health policy and the healthcare law, it is our job to make sure that they understand the implications of ACA provisions like Medicare reimbursement rate cuts to hospice. I know, I know…I’m a self-proclaimed PWIT and you might be a little skeptical, but don’t be! I have my information on good authority from some full-fledged policy wonks.

In fact, I attended a Hudson Institute policy briefing this morning called “After the Election: Can the New Congress Repeal Health Care Reform?” The panel included a deputy assistant to former President George W. Bush, former Senate health staffers, a Hudson Institute research fellow and the list goes on. The panel had a very thought-provoking discussion on the subject and the general consensus at the end of the briefing was simple. It was that new Members of Congress will have to work to implement ACA while trying to tweak or repeal parts of the law that they do not support. That is why this election should serve as a call to action for Hospice Advocates. It is the hospice community’s chance to become even more engaged and work doubly hard to enlighten new and existing Members of Congress about quality end-of-life care and its impact on communities throughout the country. Here at HAN, we’re working to ensure that there are guided opportunities for Hospice Advocates like you to do just that and they include:

  1. HAN’s Third Annual Capitol Hill Day – a two-day, all-about-Hospice Advocacy event that trains advocates to share their hospice stories with their Members of Congress. The Hospice Action Network will do all the heavy lifting- from transport, to teaching you about how to meet with your elected officials, we do it all- we’ll even schedule your meetings! Capitol Hill Day 2011 is officially open for online registration, so get registered!
  2. The Hospice Advocacy Local Leader program- a new HAN initiative to help encourage dedicated Hospice Advocates take stewardship over advocacy efforts in their hometowns. These Local Leaders are critical to mobilizing community Hospice Advocates to reach out to decision makers on behalf of hospice. We’ve just published a NewsLine article about getting involved with this program titled “Join the Ranks of Hospice Advocacy Local Leaders,” read it for more information and get involved!

I sincerely believe – and I’m sure the rest of the HAN team will back me up here – that Hospice Advocates are key to determining where the hospice community stands in terms of politics and policy on the Hill. Thus, if you embrace these opportunities to engage Members of Congress, together we can affect enormous positive change for the hospice community in terms of health policy in the coming months and years. So I urge you to worry less about political fallout from the elections and more about using this moment in time to cultivate a greater number of Hospice Champions on the Hill than we’ve ever seen before!