Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.
Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.
One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.
Wishing you and yours a holiday that’s fulfilling in all the right ways.
Yesterday's 60 Minutes program included a segment on the costs associated with dying in America. Dr. Ira Byock, a palliative care physician and former president of the American Academy of Hospice and Palliative Medicine, and Dr. Elliott S. Fisher of the Dartmouth Atlas were featured during the segment. Here is a transcript of the program.
Caring Todayannounced the grand prize winner of it's 2009 "Give a Caregiver a Break" essay contest. Winner Bob Goepfert, of Ballston Lake, NY, writes a beautiful essay about caring for his wife, Carole, who has Amyotrophic Lateral Sclerosis (ALS).
James A. Block, M.D., received the 2009 American Cancer Society Pathfinder in Palliative Care Award. The award recognizes individuals who have demonstrated innovation and ingenuity in their contributions to the advancement of the field of palliative care.
The American Academy of Hospice and Palliative Medicine announced that Timothy E. Quill will receive the Palliative Medicine Community Leadership Award at their annual meeting in March.
A new palliative medicine fellowship has begun in Washington state, part of cooperative effort between Providence Hospice of Seattle and the University of Washington School of Medicine.
The Regence Foundation announced a new palliative care grantmaking program in Idaho, Oregon, Utah and Washington, called Sojourns. The program will foster best practices, leadership and collaboration that help people with life-limiting and incurable illnesses access palliative care in their own community.
The USC Davis School of Gerontology and the Partners in Care Foundation have published a brochure to offer information about end-of-life care options to the African American community. The brochure features real-life stories and families' experiences with various programs.
The brochure can be downloaded from the Partners in Care website and health and community-based organizations can order a limited number of print copies for free.
Historically, hospice care has not been a choice for many African Americans. HFA examines this history and suggests ways to reach out to African Americans who are making end-of-life decisions in a special report, African Americans and End-of-Life Care. The DVD of this program is available here. Social workers, nurses and counselors can obtain one continuing education credit through the program.
Yesterday, NPR’s All Things Consideredlooked at the advance care planning practices put in to place at Gundersen Lutheran hospital in La Cross, Wisconsin. Reporter Joseph Shapiro tells the stories of two patients to highlight that the process helps people think through their end-of-life care options well before decisions need to be made. Shapiro also writes about considering his own advance care directive at the hospital.
From the American Foundation for Suicide Prevention: National Survivors of Suicide Day, a day of healing for bereavement after suicide, is Saturday, November 21, 2009. Every year, the American Foundation for Suicide Prevention sponsors this day to provide an opportunity for survivors of suicide loss to come together for support, healing, and information. Because the problem of suicide knows no national or cultural boundaries, survivors from around the world are invited to participate by attending a local conference or by watching the webcast from home.
2. Pre-register to watch the live webcast from a home computer from 1-2:30 pm Eastern Standard Time and then join in a live online chat immediately afterwards, or
3. You can also watch webcasts from previous years at anytime.
At their November 5 public meeting, MedPAC (Medicare Payment Advisory Commission), discussed an analysis of hospice visit patterns. The data was collected to assist them in making recommendations for changes to the Medicare payment system for hospice services. Previously, MedPAC recommended changing the current flat per diem system of hospice payments to a system that is more U-shaped, allowing for higher payments at the beginning and end of service. You can find the brief and presentation on this page, as well as a link to send MedPAC your comments. (Pallimed has posted some more background here.)
Hospices across the country care for terminally ill veterans during the final weeks and months of their lives. In honor of Veterans Day, we want to share the story of Cpl. Adam Austin and Staff Sgt. Deuntae Preston, both members of the United States Marine Corps. They serve as volunteers through a unique partnership with Heartland Home Health and Hospice in Kansas City. Stacy Higgins, Volunteer Coordinator at Heartland, matches Marines in the Single Marine Program with veterans in hospice care. HFA featured Cpl. Austin, Staff Sgt. Preston and Ms. Higgins on our Diversity and End-of-Life Care teleconference. (Read the full interview below the video.)
Tell us about your work with the Single Marine Program and Heartland Hospice.
AUSTIN: A big facet of the Single Marine Program is volunteer work. And the hospice just seemed like a very great idea, to deal with veterans. As military members we are people that can actually give something back a lot more to these veterans. Because, these veterans don't talk a lot with their families. A big thing that this program has accomplished so far is actually looking at Marines as more than just a fighting force. We are compassionate people and we are actually able to give back to the community.
What motivated you to become involved in the volunteer program with Heartland Hospice?
PRESTON: I would say what motivated me more or less was my background with the military. My grandfather was in the army. My uncle was in the navy. And I said it could me one day -- it could be a young corporal when I'm ill and they come out to visit me and it's just the right thing to do.
You know these are not only Marines, but Army, you know, sailors who laid their life on the line and just did the right thing from different wars back in the day and it was just the right thing to do.
AUSTIN: My family is not very military oriented. I'm actually the first. But I always loved hearing stories. I loved to know any type of history about anybody. And this is the perfect way for me to actually get to sit down with people and hear so many things that happened back in their time. I love volunteering and this is a perfect opportunity for me.
What have been some of your most meaningful experiences volunteering with fellow veterans?
AUSTIN: I have not found one that really didn’t want to share anything. They've been more than welcoming -- the whole family has been more than welcoming, the veterans and their spouses. I love the stories, the fact that there's still such camaraderie between military services, whether it was Marines, Air Force, Navy, Army. Like that fact when we are on the battlefield -- all that matters is that you all are brothers in a way. I love that.
My most meaningful experience was with one of our veterans -- he was a music lover and just me sitting down and playing the piano just meant the world to him, because that's something he couldn't necessarily do himself anymore. Just to give something as small as that, just to really move him; it got to me, it got to my heart.
PRESTON: My most meaningful experience was with a veteran who didn't really want us to come in the beginning but changed his mind. And we get there and the conversation was wonderful. He was upbeat. He had a lot to talk about and he didn't want us to leave. And it just left me with a smile on my face knowing that in the beginning he didn't want us to be there. We came, we had a nice conversation, enjoyed his company and it just meant a lot to me and I saw that it meant a lot to him as a veteran.
What have been some of the more difficult experiences for you?
AUSTIN: Some veterans, you know, they’ve had to go through a lot and they don't want to deal with a lot of it anymore.
I remember one; he actually just grabbed right a hold of me and said I just don't want to have to deal with this anymore. I don't want to -- I really don't want to necessarily deal with life. And I told him, “Well, you know, you're still here for a reason. I think you're still here for a reason, sir.”
PRESTON: I would say it's difficult and it's easy. It's difficult in that you don't know what you're getting into. It's easy in the mind set where when you get there, you're learning from veterans, their different experiences, their background. So, you know, it's difficult and easy at the same time.
What about being a Marine has helped you to work with fellow veterans facing the end of life?
PRESTON: I would say mainly as a Marine, we have to know -- you know, to deal with any type of death and dying; and just being able to cope with stuff like that, it does make it a little easier to be able to talk with the veterans.
AUSTIN: What I take from this program is hope, hope that when I am much older and I'm a veteran -- that a program like this will still be around, in which I can share my stories.
I think the biggest thing with this partnership is really getting to give back to these veterans that have already done so much, for how they've already served their country.
And the fact that we can at least show them that yes, you are here, you're still part of that brotherhood. You still mean so much to us as present day military. National Veterans Day, November 11, 2009
The November 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Pallimed Arts & Humanities blog.
November is National Hospice Month, a month to recognize the invaluable work that hospices do each day, to educate consumers about the benefits of hospice, and to honor those who cope with caregiving and end-of-life issues in their own lives.
The Centers for Medicare & Medicaid Services (CMS) is providing updated hospice statistics from 1998 to 2008. The statistics include the 20 most frequent diagnoses, the number of patients, average length of stay, and trends over time in length of stay, by diagnosis.
From the data trends report:
Hospice Terminal Diagnoses
The table also shows that the frequency of some hospice terminal diagnoses has changed over time, with relatively fewer cancer patients and relatively more non-cancer patients as a percentage of total hospice patients. The percentage of all Medicare hospice patients with a terminal diagnosis of cancer dropped from 52.8% in 1998 to 31.1% in 2008 [data not shown]. Lung cancer has been recognized as the most common diagnosis among Medicare hospice patients every year since 1998. However, in 2006 non-Alzheimer’s dementia became the most common diagnosis among Medicare hospice patients. The percentage of Medicare hospice patients with lung cancer dropped from 16% in 1998 to 9% in 2008. In addition, we are seeing a notable increase in the number of neurologically-based diagnoses. We are also seeing a marked increase in non-specific diagnoses such as “Debility, Not Otherwise Specified”, and “Adult Failure to Thrive”.
Average Length of Stay
Along with the shift in the mix of hospice patients, there exists a significant increase in the average length of stay (LOS) for hospice patients. In 1998, the average LOS for hospice patients was 48 days, but by 2006 it had risen to 73 days (a 52% increase). Since 2006, the average LOS has begun to decline slightly, dropping to 71 days in 2008, which is a 48% increase from 1998. Charts 1 and 2 show that the average LOS varies by diagnosis. For the top twenty diagnoses in 2008, the average LOS ranged from 28 days for chronic kidney disease to 105 days for Alzheimer’s disease and other degenerative conditions. While the average LOS from 1998–2008 for hospice patients with diagnoses such as chronic kidney disease or cancers has remained relatively stable, the average LOS rose significantly for most other diagnoses, thought it has recently begun to decline slightly. Charts 1 and 2 graphically demonstrate the difference in the changes in lengths of stay for cancers versus other diagnoses in the top 20 list.
