Seeing Things for Myself

Here at NHPCO and the Hospice Action Network, almost all staff members have direct hospice experience. We count among our numbers people who used to run hospice programs, people who were nurses or administrators at hospices, and almost everyone here has had a relative or friend who spent their last days, weeks or months in the comfort of a hospice care team.

My grandfather died in a hospice program on Long Island in 2004. At that point, I was working full time as a traveling stagehand and couldn’t make it back to be with him in his final days. My parents and family were exhausted from all of the time spent caring for my grandfather while he was in the hospital. When my parents told me he was going to be transferred to hospice, I could hear the mix of relief and sorrow in their voices over the phone. I think they were realistic— my mother was a C.C.R.N., and she had been prepping everyone for what was coming. I know that my grandfather’s time in the hospital was tough – my Dad told me a story about coming back to my grandfather’s room, finding him not there and literally chasing the doctor down who had ordered another round of x-rays. I wish I could convey to you the frustration in my Dad’s voice when he was retelling that story – the exasperation of knowing that he was seeing his father in his last days and having to find the 25 year old intern who hadn’t even consulted with the family before ordering yet another expensive, unnecessary test.

That’s most of what I know about how my grandfather passed.

I share those two anecdotes as a sort of preamble to the rest of this post. In October of this year, I visited Gilchrist Hospice to get a full picture of what a day in a hospice is truly like. When I visited Gilchrist, I didn’t know quite what to expect. After almost a year of working for the Hospice Action Network, I was familiar with the idea of hospice, but I didn’t have a good grasp of what hospices did day-to-day . Angie Truesdale, our director of public policy, suggested that it would be worthwhile for me to spend some time observing what hospice truly offers its patients. I could walk you through my whole day, but I don’t want this to be a sort of ‘how I spent my summer vacation’ blog post. Instead, I’d like to share a few little snippets of the day.

-When I first walked into the corporate office, they showed me the referral room, and mentioned that this room was staffed 24 hours a day, and was on its own independent power with a backup generator. It may seem funny to hospice workers who work around the clock, but until then, I just didn’t think about the fact that the referral to hospice care could come at any hour of the day or night.

-In the inpatient facility, every room had natural light. There were no shared rooms. In each room, the medical equipment (oxygen, etc), was as discrete as possible. It was built into the cabinets and actually had to be pointed out to me before I saw it. Each room had a lounge chair, which was a pull out bed. There were clearly no set visiting hours.

-At the Interdisciplinary Team Meeting, I was surprised at the passion and candor with which the staff handled some tough situations. When the team social worker was talking about some at-risk family members who might need urgent grief counseling, it was amazing to see the doctors and pharmacists chime in with their observations on the patient’s family and what sort of counseling they might need. My own biases led me to believe that most doctors don’t focus on areas outside of their medical expertise. It was refreshing to be proved so wrong in this area.

-I sat with a social worker as she talked to a patient’s daughter. The woman was very realistic about her mother’s condition, but only had one or two small requests about meals. The social worker went out of her way to ensure that the nursing staff and the cooking staff knew about these requests.

-I was able to enter a patient’s room with a nurse while she performed a checkup. The family said that the patient had enjoyed a glass of Jameson in his better days, and asked if they could bring in a little mini-bar sized bottle of whisky with which to dab his lips occasionally. The physician went so far as to write this up in the course of treatment so that the night shift would know about it and be able to give this man a little bit of comfort in a way he enjoyed.

-The social worker talked about the services held in the chapel, even during the snowstorms in February when most of the D.C. Maryland area was shut down. She talked about staff sleeping on couches and stoically working hour after hour because nobody could get to the hospice to relieve them.

-I remember seeing a family member asleep on a couch in one of the big common rooms, and another member walking in with a pizza. They were able to sit in a little kitchenette and share a meal and a moment’s rest. The area had been designed with this in mind — this family didn’t have to sit in a hallway or a waiting room, there was a comfortable nook expressly for them.

-One patient was in his room, fully aware and chatting merrily away with his grandson and wife- his spirits were high and he was even wearing a t-shirt from his college over his gown. There was no sadness that I could see – only family enjoying one another’s company.

I could keep going. I think the biggest thing I took away from the day was how truly different the philosophy of care really is. Patients and families in hospice aren’t seen as ‘casework’, nor are they pitied – there is honor, respect and true compassion here. When I think of my father – a man whose emotions are usually reserved – running down a crowded, sterile hallway to stop a pointless, expensive set of x-rays, it sets my blood to boiling. My grandfather didn’t need that test, he needed comfort and peace and freedom from pain. The fact that someone with a quarter million dollar education didn’t understand my grandfather’s needs points to the huge disconnect between what medical care we can provide in this country, and what care we should provide.

I know I’m preaching to the choir on this- if you’ve clicked through to our blog, you most likely agree with the hospice philosophy. Here’s the next step, friends – let someone else know. Tell one of your friends who might not understand what hospice does about your experience. Tell the people making decisions about how we practice medicine in this country about hospice. Tell your lawmakers at every level. Tell your city council, your state legislators, your Congressmen and Senators, tell the President of the United States. We call ourselves the Hospice Action Network, and although we’re all busy we must take the time to advocate for the better model of care that is at the heart of hospice.

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!

Serving Those Who Served

Recently, NHPCO published its annual 2010 Facts & Figures in Hospice report. The report is a treasure trove of information about hospice usage. One of the big facts we like to highlight from the report is that almost 85% of hospice use is paid for by Medicare. Because federal funding of healthcare, including hospice, is always under budgetary pressure, we need to advocate for adequate funding for the Medicare Hospice Benefit. But this week we’d like to shift gears and examine a different part of the hospice-government relationship: hospice’s role in serving those who served us.

The Hospice Action Network is a community of people who have rallied together around the idea that everyone deserves to face the end of life with dignity and comfort. If you listen to the media, it can be easy to believe that our freedoms are constantly at stake, and I know you cringe every time a false statement is made about ‘death panels’. However inflammatory these statements may be, I take comfort that while the level of discourse may not be what we’d hoped at times, there is at least a discourse to be had.

The freedom to debate complex ideas like the role of hospice in health care is considered so fundamental a right in this country, we often take it for granted. That someone fought long and hard for the liberties I enjoy on a daily basis warrants reflection from time to time. I believe that the people who have served this country deserve our respect and honor for the sacrifices they have made. Because of the dedication of those men and women who have served in the U.S. Armed Forces, the Hospice Action Network has the ability to advocate for better end-of-life care for all Americans- including Veterans.

Today is Veterans’ Day. You may not know this, but 25 percent of the people who die in America every day are veterans. Over 1,800 men and women that served our country will pass away today. I believe that they have the right to as much comfort and peace as they desire when facing a terminal illness. I also believe that the hospice community has a responsibility to provide the specialized care that Veterans require at the end of life. We have a duty to serve those who served us.

If you consider yourself a Hospice Advocate, I encourage you to find out more about the special services that help U.S. Veterans at the end of life. I know that I am able to advocate for hospice care for all Americans only because of the sacrifices of these few. NHPCO has started a new program this year, in conjunction with the Department of Veterans’ Affairs- We Honor Veterans. Check out their website for more information about how you and your hospice program can help.

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!

The Whole Picture

Here at the Hospice Action Network, we like to consider ourselves more than a little savvy when it comes to social media. We put new patient testimonial videos on Youtube on a regular basis. We post on our Facebook page at least 12 times a week. We’re active on twitter. We live-streamed the 2010 HAN Hill Day Pep Rally for free over the internet to thousands of Hospice Advocates nationwide. As an organization, we are always on the lookout for the ‘next big idea’ to advance Hospice Advocacy.

No one can deny that the Internet has been one of the most important vehicles in the last century for facilitating communication and action. But is it our entire future as advocates? “Small Change: Why the revolution will not be tweeted,” a piece published in The New Yorker, by Malcolm Gladwell suggests that it is not. If you have a few free minutes, we think its well worth the read. The crux of the article is that while the internet and social media have made it easier to share information and in some ways advocate for causes, they simply cannot replace a structured, well coordinated grassroots advocacy operation.

This bears some thinking. The modern worldview frames the Internet as a cure-all for any number of logistical problems, sometimes to a ridiculous degree- ‘look, my iPhone can pay my taxes, control my TV and feed my cat!’ And it’s true that there are many wonderful features for advocacy that the Internet has unleashed- our Legislative Action Center is a powerful tool for breaking down barriers between you and your elected officials, and helps us to send tens of thousands of messages at a time to them stressing the importance of hospice.

In the article, Gladwell draws some lessons from the highly organized approach of the civil rights movement. He describes the hierarchy that was critical in organizing so many of the rallies and sit-ins that eventually led to some of the most monumental legislation of the last century. When he states that “…the civil-rights movement was more like a military campaign than like a contagion”, Gladwell is suggesting that social media inherently lacks the structure that made the civil rights campaign so successful.

The lesson we take away from the article is that sometimes advocacy can’t be reduced to mouse clicks. If you’re reading this, you almost definitely have an email account — how many emails in your inbox were important this morning? How many did you read start to finish? How many did you delete sight unseen? The Internet has removed almost all logistical barriers to communication, but it hasn’t quite figured out how to capture passion. When somebody clicks on a link, do they read all of the content on that page? There’s no way of knowing. The metrics the Web can collect are intriguing, but they’re not the whole picture.

What we do know is that a dedicated, coordinated group of people do have the ability to affect change. For the last few years, the NHPCO’s lobbying affiliate has been recruiting a group of people who constantly go above and beyond their normal jobs to do any number of concrete tasks to advocate for hospice on the federal level. We have people organize Congressional visits to their program. We have hundreds of people fly to Washington, D.C. to take direct meetings with their elected representatives. We have people willing to call their officials to tell them their personal hospice story. These tasks take an immense amount of coordination, preparation, and to be effective everyone must share a common message. We are so thankful for these dedicated Hospice Advocates and we know that no amount of Facebook posts or emails can replace them. We’re always looking for more of these Hospice Advocacy Local Leaders. We’ve developed some significant resources, trainings and educational offerings for those willing to take it to the next step. If you’d like to get more involved, you can email us at to start a dialogue.

Thanks for your time, and thanks for being a Hospice Advocate.

Tony, HAN Staff.