Hospice Workers: You Keep Getting Better

This year was the first time that I actually got the chance to participate in the Hospice Action Network’s Capitol Hill Day, and it truly changed the way that I look at my job.

In my three years at NHPCO I have met some of the most compassionate people I know. Hospice workers are, after all, caretakers by nature. They are comforters and guardians of the dying: a population that most of the healthcare industry does not cater to, but instead attempts to rescue. They provide dignity and grace at the end of life: a time that most of us associate with our own grief and loss. They are protectors of a level of quality care that many will experience for only several precious months. Knowing all of this, I have not been surprised to find that hospice workers are also, by nature, advocates. They are guards of an industry that I truly believe in and work to support. And, on April 6, 2011, I was able to share in their passion as they made their way to the United States Capitol to speak on behalf of the hospice community as a part of the Hospice Action Network’s Hill Day.

In the past I have worked with NHPCO’s Council of States, some of our larger committees, and a mishmash of groups from hospice professionals in correctional facilities to those reaching out to homeless veterans. Needless to say, my career at NHPCO has provided me the chance to meet a lot of different people with different points of view. Hill Day was new: this was a group of people with one voice and one message. We were a single unit, shivering in the cold at the Pep Rally on the Capitol Grounds, trying to get through security in the Congressional Visitors Center and comparing maps and meeting schedules.

The real difference for me was that my work with so many different groups at NHPCO made sense to me that day. I recognized some of our We Honor Veterans champions and met, in person, with people that I have been emailing forever. I caught up with Regulatory Committee member Renee Hahn, and Council of States representative Julie Pinkerton, both from Kansas. I talked to them about what is important: the HELP Hospice Act and how great life in the Midwest can be. I made an important connection with them – our points of view are different, but our worldview is the same.

On Hill Day I was surrounded by passionate, intelligent and well-informed professionals who were familiar to me, but who I was seeing for the first time in a new light. These were not just conference attendees and email distribution lists. They were not records in a database or names that I carry around on tent cards. Hill Day for me was about closing the loop: hospice workers are compassionate, they are caretakers, they are proactive, they are advocates, they are professionals, but to me they are much more. They are colleagues, friends and partners of mine.

A Year of Action

On February 17th, I accompanied HAN Director of Public Policy Angie Truesdale to the Longworth House Office Building, across the street from the Capitol Building in Washington, D.C. We were going there to meet a delegation from the Hospice and Palliative Care Association of New York State. Led by Kathy MacMahon, the President/CEO of the Hospice and Palliative Care Association of New York State and NHPCO Public Policy Committee member Dan Grady, the group of seven were there to meet with and educate their Members of Congress- some of whom were still figuring out the phone systems. Like many states, New York had many Freshmen Representatives take their seats in the 112th Congress that began this year.

It was an odd moment for me- in December 2009, only days into my time at the Hospice Action Network, I traveled to the very same spot to meet with the same group of people and wondered what I had gotten myself into. Remembering the chaos that was the Health Care Reform process made me think about the things we have done with your help in the past year. Two Congressional sign-on letters. Hill Day 2010. Sponsoring a Policy Breakfast with CQ Roll Call. A vibrant Facebook/social media community. Video testimonials. Positive press and letters to the editor in local and national media. 2010 was anything but quiet.

And believe me, we’re gearing up for an even bigger 2011. This year’s Hill Day promises to be one of the biggest and best yet. We’ve got some great surprises lined up- on top of having a speaker from The Partnership for a More Perfect Union, a pep rally on the Capitol grounds, a killer respite room and our usual amazing strategy sessions and meetings, there might just be one or two more things up our sleeves. You’ll have to stay tuned to find them out- so follow us on Facebook or twitter, subscribe to the Legislative Action Center, but keep in touch.

Thanks for all you do, Hospice Advocates, and here’s to a great 2011!

A Hospice Advocate reflects on Rep. Giffords

Hospice Advocates, in the wake of the shootings in Arizona, we would like to share an email we received from Carol Clark, the Director of Volunteers at Casa De La Luz Hospice in Tuscon, Arizona. Please read on for Carol’s thoughts on Rep. Giffords wonderful public service.

“I started an email to you Monday, but was too stunned, words hard to come by. I thought you may be wondering. All seemed surreal. The horrible shooting took place in NW Tucson, within one mile from our Casa de la Luz Hospice in Oro Valley, at a place we all regularly frequent, and 4 miles from my home. The sense of loss here is palpable. Individually and collectively, we are coming to grips with tragic loss, reflecting on life, heroes among us, mysteries, finding ways to help the victims, and attend funerals and memorials.

Seeing the moment of silence in D.C. on TV, visiting outside Gabby’s office, and now seeing on TV and hearing our President share such healing words, among the others yesterday, helped me greatly and everyone else I have spoken with. Hopefully, so will many others in our community, Arizona, and our country.

Gabby and her staff epitomize constituent service. She was the sole federal elected official to sit down with our AZ delegation at Hill Day 2010 on a very busy day for her, with committee meetings she was darting in and out between to allow for 15 minutes with us personally. We were already afforded time with her aide, Lauren, who listened well, communicated with Gabby, then went the extra mile ushering us along the many passageways to get to Gabby’s committee location!

I have known Gabby, Ron Barber and Pam Simon here since City Council days, and Gabe was my local contact who helped our hospice get information from CMS when we couldn’t get a response from them regarding supply of their 2010 updated Medicare Hospice Benefit booklet.

Had I known prior to a commitment I made with other officers in my Toastmasters Club that morning for training at the U of A, I would have been at her ‘Congress on the Corner.’ I learned about the shooting at noon.

Like many others, I try not to miss her ‘Corner’ events. They are always fun, and it’s a great way to reconnect for even 3 minutes, thank her for her service, ask her continued support for hospice, and promise to keep in touch.

We are coming together as a community, something Tucson has always done well as a big small town. Stories, stories, and more stories…

Warmest regards,


Carol Clark

Casa de la Luz Hospice”

Carol Clark is an active Hospice Advocate and a Member of NHPCO’s Public Policy Committee.

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!