September Sausage Making

“Those that respect the law and love sausage should watch neither being made.” –Mark Twain.

While Mr. Twain certainly did have a gift for turning a clever phrase, we here at the Hospice Action Network believe that our Hospice Advocates should be as informed as possible about how we represent them in Washington. It dawned on Tony and I that it may seem like things are quiet here at the Hospice Action Network offices. I know that many of you saw Don’s recent letter to the Joint Select Committee on Deficit Reduction (the Super Committee), but you may wonder what that means for HAN staff and what exactly we’re up to as Congress returns to DC this fall.

As a grassroots community, we find of ourselves in one of those DE-creasingly rare times of behind-the scenes activism. This means that things aren’t necessarily “happening” on the more public stages of DC. But, it is a good opportunity for me to let you know the types of things that do happen during these periods, which don’t necessarily make it into the media or even our typical Action Alerts. Here is what we have going on this month on your behalf:

  • HAN staff recently met with our Senate hospice champions to map out strategy and positioning options for S. 722 (The HELP Hospice Act), along with fine-tuning some messaging around the ongoing debt negotiations and the challenges facing the hospice community. This is one of a series of Congressional meetings we have scheduled this month (and every month) and part of our constant dialogue with Congress. These meetings may be routine for us, but they are critically important to maintaining the presence of a strong, unified hospice presence on Capitol Hill.
  • Last week, NHPCO HAN CEO Don Schumacher and other HAN senior staff engaged in a friendly and substantive HAN-facilitated meeting with senior leadership at CMS covering the current state of hospice in America and the challenges and opportunities that lie ahead for the community.
  • In an effort to ensure that we are marshalling all of NHPCO’s resources and that all key staff are “smart” on these crazy budget negotiations, HAN staff facilitated an internal staff briefing with a former Staff Director of the Senate Budget Committee.
  • HAN staff also facilitated an informational meeting with White House staff for FHSSA (NHPCO’s philanthropic arm focusing on hospice in Africa), ensuring that the Obama Administration is aware of the hospice community’s commitment to serve those in need well beyond our borders.
  • Additionally, this week, staff from HAN and the NHPCO regulatory team will be meeting with officials at HHS to discuss the essential health benefits package, and why hospice is a natural fit for coverage.
  • Later in the month, HAN is hosting a Congressional briefing on hospice in the nursing home, featuring the latest research by Dr. Joan Teno and the personal perspective of the value of hospice in this setting by a hospice patient family member and a hospice provider.
  • HAN staff continue our outreach to MedPAC commissioners, as well as their professional staff to better set the stage for their ongoing deliberations on hospice issues.
  • Finally, HAN will be represented in a meeting we have set up between Don Schumacher and one of the Super Committee members.

We just wanted to let you know that we have your back, and that things are definitely not so quiet around here. What can you be doing? As always, we encourage you to continue to nurture your existing relationships with elected officials during this time, and when (and, actually, if) the time is right for large scale, activism – you’ll hear from us. All the resources you need are on the HAN Web site, or email us at .

You don’t have to like it, but let’s not call it a death panel.

Maybe the heat and the debt negotiations are getting to me, but I felt my blood pressure rise this week when I saw the reports on the new efforts to repeal the Independent Payment Advisory Board (IPAB). Following the back-to-back House hearings on IPAB, media reports, blogs and transcripts from various Hill events were calling attention to claims by some members of Congress and pundits that IPAB was really an acronym for death panel. Seriously – that, again?

IPAB, passed as part of health care reform in the Accountable Care Act, is, or will eventually be, the new government agency tasked with reducing the rate of growth in Medicare without affecting coverage or quality.

For the record, NHPCO does not support IPAB, and we engaged in efforts to remove the Board from the final health care bill. I’m not going to debate the merits of IPAB’s existence here. But, let’s be clear about one thing: IPAB is not a rationing panel and it is certainly not a death panel. In fact, the ACA specifically prohibits IPAB from rationing care. So why are physicians in Congress saying that IPAB will cause seniors to die?

Maybe there is some real strategy behind this tactic. The last time that particular phrasing was thrown about alongside the term ‘rationing,’ the Administration abandoned something we did support: Medicare reimbursement for voluntary advance care planning consultations. We’ve been here before and the hospice community knows all too well the costs of such scare tactics. The previous iteration of this particular brand of fighting left Medicare beneficiaries afraid to talk to their doctors about their end-of-life wishes for fear that some panel of government bureaucrats would ultimately decide whether they lived or died.

Although the Board is not supposed to produce recommendations until 2014, there are already many working against its very creation, not to mention its effectiveness. Not only does the Administration seem to be in no hurry to set up IPAB and take on another high profile health care battle, but who would want to serve on it and go through the Senate confirmation process? At the same time, pretty much every health care provider group and quite a few consumer groups are lining up and lobbying for its repeal. And with a few Democrats who votes for health reform starting to call for its repeal, maybe it is safe to say that IPAB is currently on uncertain ground.

But, if there is ground to be gained in weakening or even eliminating IPAB, let’s debate that on the policy merits. Whatever our views on IPAB, we have to resist the urge to engage in such dangerous rhetoric. At this rate, we have no idea what portion of health reform will be the next political bogeyman – – but, let’s hope this is the last we’ll hear of death panels.

Despite the Hype, Quality is the Issue over Tax Status

A recent “opinion piece” in the Journal of Law, Medicine and Ethics, purporting to distinguish between for- and not-for-profit hospice care, falls short on several points. The article, in fact, fails to make its point: a clear distinction between for- and not-for-profit hospice care. Throughout the article, the authors note that there is a scarcity of research that shows a difference in quality of care, based on the tax status of the hospice provider. Here at the NHPCO Hospice Action Network, we have consistently stated that we believe the quality of care that a hospice provides should be the central issue that separates the good programs from the ‘bad apples.’ As a result, we were a little uncertain about the point that the authors were trying to make.

There are those individuals who feel that virtually any capitalist participation in the health care field is suspect. Let’s acknowledge that. And, everyone is certainly entitled to their opinions. But, let’s face a basic fact. The entire American health care system is made up of a mix of for- and not-for- profit providers, and other healthcare sectors have flourished under this model, with quality care being provided to all. It doesn’t look like the provider mix is going to change anytime soon.

So, what is the point of trying, in a veiled fashion, to paint a significant part of the hospice community as “bad players,” citing a trivial example of a hospice provider handing out pens and coffee cups to nursing home staff? Are the authors suggesting that a patient referral, once removed from the actual patient and family, can be bought with a $.43 ball point pen or $1.37 mug?

Health care delivery systems, including the hospice community, are shaped by the requirements of the care that they are asked to deliver and the adequacy of their reimbursement, not by the tax code. I am not aware of a single health care professional that consults the Internal Revenue Service Code to determine a course of treatment or intervention for a patient. Each tax status has its own relative benefits and burdens. There is “no free lunch” for either type of tax status. Indeed, the tax code places clear and significant responsibilities on both for-and not-for-profit entities.

So, from an institutional framework, both tax structures have very real financial and legal obligations to fulfill. But, the professional caregivers have a more important obligation, and that is serving the patient. Based on the overwhelming feedback we have received, over the past ten years, from surveys of family members, all types of hospices are delivering on those promises of high quality, patient-focused and compassionate care- irrespective of tax-status.

To me, the frustrating part about the article is that it relies on quasi-sensational headlines to draw the reader to a set of opinions, which I feel are lacking in substantive foundation. While articles such as this might make for good entertainment, they can do real and lasting damage to hospice’s image on Capitol Hill. We here at the Hospice Action Network have talked about the important role that the news media play in influencing your elected officials. For example, a story about the value of hospice can make the difference in a Senator singing on to the HELP Hospice Act. Conversely, a story like the one mentioned above can make a Member of Congress have second thoughts about moving the bill in the House. It’s important to note that elected officials tend to look at the industry as a whole- with the current debt crisis, two wars, and the looming 2012 election cycle on their plates, they don’t have time to play ‘referee’ in the hospice industry- they look to us to work together to be a model of quality, cost-efficient care, across the board. Divisive articles, or even murmurs or finger-pointing from within our community, that are based on loose assumptions only serve to lower their opinion of the whole industry, regardless of tax status.

As a result, we have to take the time to debunk the innuendoes, false assertions and thinly veiled references to unethical and possibility illegal behavior. One of the biggest resources that the Hospice Action Network has at its disposal is good will- who could be against quality care for those facing the end of life? Stories like this, that unnecessarily cast hospice in a bad light, cut into that resource. The energy that NHPCO and HAN have to take to walk back these types of stories take time and energy away from more pressing and important issues, like protecting the integrity of the Medicare hospice benefit and assuring expanded access for the increasing number of patients and families seeking a coordinated and seamless end of life care experience. Our resources are finite and I think you’ll agree that we’d much rather be spending them championing the model of care that hospice represents instead of having to play defense dispelling myths and incorrect assumptions.

So, perhaps a more constructive focus might be found around urging both Medicare beneficiaries and their families, with guidance from their health care professionals to be engaged in ongoing and informed conversations about their desires for care at the end of life. The product of these discussions should then be shared with family members, health care providers and others. If we focus on this, quality programs will win the day, whether they are for-profit or non-profit.

Time is precious. We know that. Let’s focus our efforts on the here and now, and not some theoretical arguments and a stalking horse for a larger agenda. We believe that high quality patient and family care should always get our undivided attention- it’s what’s good for the industry, and ultimately it’s what’s best for the patient and their family.

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!